HealingWell
Search Close Search
☰

When to commence SRT?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/20/2014 1:06 AM (GMT 0)
Hello to all, This is my first post.

I'm 59 years old. Very fit and a long distance runner. I lost my father to prostate cancer in 2011. He would've lived to be hundred if they had treated him properly, but he wasn't even offered a biopsy. I live in England.

In 2012, one year after losing my father to PC, my PSA went up from 1.70 to 2.92 in 18 months. My GP who is a good man and a good doctor, sent me under the two weeks urgent rule to see a specialist in Newcastle Freeman hospital in the north east of England.

I was offered an appointment within a week. I was only seen by a nurse who took blood and did an DRE exam of my prostate and took my history. I told her that I had come with prostatectomy on my mind. She laughed and said we don't do that to order ! I asked her to refer me for an MRI scan - she replied that scan will not show anything - then she sent me home. I received a letter from her telling me to check my PSA next year and the level of 2.92 was normal for my age regardless of the velocity.

I was not convinced and my GP was shocked by their attitude. I asked my GP to send me privately to Nuffield hospital for an MRI scan. I had the MRI on the same day. The result was reported as suspicious for cancer ! Later I was informed by Nuffield hospital that the Freeman hospital were trying to obtain the result of my scan without my consent. I told Nuffield that Freeman can have it if they paid for it. This scan cost me £600. At this point Freeman Hospital offered me an appointment with an urologist, in an attempt to cover their act of negligence, but I had lost confidence in their care for patients.

Following that I was forced to have my biopsy carried out also privately as you can't mix private and NHS treatment in England. I had 30 core saturation biopsy under general anaesthesia. The result was negative for cancer. But I developed septicaemia as a result which almost killed me, because the performing surgeon and the anaesthetist forgot to give me antibiotic for the procedure. This cost me another £4000 !

Four months later my PSA was 4.5, so I talked with my GP and asked him to find a surgeon who is prepared to operate on me because of my family history. Eventually I met Mr Karim, one of the known surgeons in this field in London. He is one of he best robotic surgeons who teaches robotic surgery across the country.

I had my operation (privately costing me £16000) at the beginning of June 2013. The recovery was very fast and trouble free. I was continent from day one after the catheter removal, with no ED. My histology reports were carried out by Bostwick labs in London and were excellent. I had a very small cancer of which the result is in my signature. I was running two weeks post op. My first sPSA (8 weeks post op) was 0.007, and the next one three months later (6 months post op) was 0.006. The third PSA (nine months post op) was 0.008.

Unfortunately my one year sPSA went up to 0.013. Mr Karim (my surgeon) referred me to an oncologist in Freeman hospital - my local hospital for my convenience. He wrote to the oncologist suggesting that if my PSA ever reaches 0.05, I should be offered second line treatment. I met Dr Pedly at Freeman hospital. I was not impressed by his knowledge. He told me that when my PSA reaches 0.02. he will send me to SRT. I was really shocked as Freeman hospital labs are not capable of performing super sensitive PSA (sPSA) test and their test tolerance only goes down to 0.03 - so that at 0.02, I would still be classed as undetectable by their standards.

I had prostatectomy in the hope that I will never face this disease in the future and with the promise that I will be cured. But now I'm facing a dilemma of aggressive treatments and possible life long side effects from these treatments.

Can someone here please guide me and provide me with some information as to my best line of action. Here in England the level of doctors' knowledge is not so good, and their attitude is best described as careless.



30 core biopsy: Negative with PIN
RALP: June 2013 Mr Karim London.
Histology by Bostwick lab:
SMALL ADENOCARCINOMA, GLEASON 3 + 3 = 6 PRESENT IN THE LEFT APEX ONLY.
Tumour volume: Approximately 0.07 cu cm (about 0.1%).
Apical margin: Negative.
Bladder margin: Negative.
Circumferential margin: Negative.
Perineural invasion: Negative.
Vascular/lymphatic invasion: Negative.
Extraprostatic extension: Negative.
Involvement of seminal vesicle(s): Negative.
Premalignant change: Multifocal high-grade prostatic intraepithelial neoplasia.
Other pathology: Nodular hyperplasia, chronic active inflammation.
Pathologic stage (TNM 2010): pT2aNx.

8 weeks sPSA: 0.007
6 months sPSA: 0.006
9 months sPSA: 0.008
1 Year sPSA: 0.013

Post Edited (Zeddy) : 8/13/2014 7:10:51 PM (GMT-6)

Posted 7/20/2014 3:09 AM (GMT 0)
First, let me offer condolences on the all too recent death of your father. Having lost both of my parents to various cancers, I know how that can affect one's whole outlook towards health. His tragic death seems to have propelled you into a nightmare that you are still living in. I strongly suggest that it's time to free yourself from the nightmare. I know that when I was first diagnosed with PCa, and given my parents' history, I sought the assistance of a good psychotherapist who helped me to live in the world as it is, rather than in a nightmare of what-ifs and could-bes. You might decide to pursue the same path afterwards, but it will be you making the decisions rather than your fears.

Heredity is not destiny. Yes, it is true that there is a genetic component to prostate cancer, but a lot of very complex interactions have to happen for the cancer to develop. It is far from certain, and given your Dx, very unlikely that your disease would follow the same course as your father's.

I am also sorry to hear about your nearly fatal septicaemia. I am not surprised to hear that your doctor neglected to give you an antibiotic prior to your biopsy. I can't imagine any competent doctor in the US who would remove your prostate without a positive biopsy. The Hippocratic Oath starts with "First, do no harm." Removing a healthy prostate is a major harm, even if it had a tiny bit of insignificant GS6 that most likely would have never done anything.

You have discovered the downside of ultrasensitive PSA tests. Tiny fluctuations can increase your already high anxiety level, and to no purpose. I hope the doctor at Freeman meant that he would discuss SRT with you if your PSA hit .2 (not .02), and was confirmed, since that is the definition of recurrence. It is not even clear then that SRT would be of any benefit. It seems most likely that a bit of healthy prostate tissue was left behind, as is often the case. It continues to produce small amounts of PSA and perhaps always will. Perhaps it will ease your anxiety to know that GS6 has never been known to metastasize.

I'm glad you found your way to HW. I suspect you were really looking for a reality check, and I hope that you will be the better for it.
Posted 7/20/2014 7:48 PM (GMT 0)
I'm happy to see that Allen brought up the problem with ultra sensitive PSA tests. I agree that your cancer is very low risk,, but I understand that your genetics make you ultra careful about staying ahead of your cancer. You are definitely a candidate for watchful waiting IMHO .
Bob
Posted 7/20/2014 10:34 PM (GMT 0)
Thank you Allen and thank you Bob.

I appreciate your sympathy and guidance. Yes Allen, I think having a chat with a psychologist is a good idea, but it may not be as effective in my case as I am a psychologist myself. However, I agree with your outlook on life, and you are also right about my continuing nightmare.

I should have mentioned in my previous post that PC also killed my grandfather, my uncle (dad's brother) and my father. I was tested positive for the gene.

Mr Karim, undertook the operation on the basis of improving the quality of my life due to my concern in developing the cancer. Also I have been suffering for 7 years with chronic prostatitis and inflammation of the prostate as the result of medical negligence by a doctor who didn't have a clue how to catheterise a patient. I had a small operation on my knee due to a running injury. The doctor caused damage and infection by inflating the balloon within my prostate when I was numbed from my waist down (spinal block anaesthetic). After my prostatectomy, the quality of my life has significantly improved.

To be honest Allen, the only reason I decided to seek guidance on HW is because of the comment made to me by the oncologist Dr Pedley concerning the commencement of SRT at the PSA level of 0.02 and not 0.2. My wife, who was present at my consultation, also queried this figure with him and he vehemently affirmed that he would start SRT at 0.02 level because the PSA was 'detectable'. This was news to me as I have never encountered anyone recommending SRT at 0.02. That is why I wondered if anyone else on HW has had a similar experience. Of course, if this is a false statement made by the doctor (who is the Clinical Director of Oncology at this large regional centre) then my future would not be safe in his hands.

Good luck with SRT Bob ...

Frederick.
Posted 7/21/2014 1:10 AM (GMT 0)
My PSA went from <.01 to .02. My doctor said one more increase I should start SRT. If is still at .02 and I am testing every 2 months. I do believe there is noise in the ultra-sensitive PSA tests and do not plan to start SRT until PSA increases higher. I haven't decided what that number is but it will be <.1 but greater than .02.
Posted 7/21/2014 2:03 AM (GMT 0)
Zeddy,

You had an insignificant amount of a G6 cancer that probably would never had caused you harm. A G6 is not capable of metastasizing outside the prostate under normal circumstances. SRT is usually given when psa reaches .2 and not .02.
I'm sorry to hear about all your troubles, but don't compound them by getting SRT.
Posted 7/21/2014 12:48 PM (GMT 0)
Hi Zeddy

I live further south than yourself, close to Milton Keynes. I am surprised that the care that you have received on private appears to be sub standard. I had 2 biopsy's from separate private doctors both of whom warned me of infection risk and loaded me with antibiotics before and after the event.

I would reiterate the warnings on SRT. If you are looking for quality of life issues, note that SRT generally goes hand in hand with a hormone treatment that will probably leave you tired, cause hot flushes and can cause osteoporosis. You are effectively menopausal! The hormone therapy is generally administered for 2 years, and it takes a further 6 months to a year for the effects to wear off

I have just finished a course of SRT (5 days out). It was 6.5 weeks long. In my case side effects were fatigue and cystitis - this started early on me and has for the last 5 weeks made it extremely painful to urinate. For the cystitis I was given 2 different drugs, neither of which helped and one of them made me so out of it I had to give up driving for a while. The side effects could worsen for 10 to 14 after completion of SRT, and then take approximately the same time to dissipate as they have been around. So that for me indicates another 7 weeks of taking painkillers to pee!

I got unlucky on the SRT SEs score, bit just wanted to point out the QoL issues you may face on SRT, and would caution to not pull the trigger unless you are sure that it is necessary. 0.02 seems very low compared to the standard 0.2 threshold. I went at 0.11, but there was a definite projectory of increasing detectable PSA
Posted 7/23/2014 1:37 AM (GMT 0)

John T said...
Zeddy,

You had an insignificant amount of a G6 cancer that probably would never had caused you harm. A G6 is not capable of metastasizing outside the prostate under normal circumstances. SRT is usually given when psa reaches .2 and not .02.
I'm sorry to hear about all your troubles, but don't compound them by getting SRT.

Thank you John. The issue of "A G6 is not capable of metastasising outside the prostate" is not an accepted study in England. We are many years behind the US. For example, the robotic surgery is very new in England - especially in the north !

I spoke with a lady in 'Cancer Research UK' today. She informed me that this theory was not accepted in England.
Posted 7/23/2014 1:52 AM (GMT 0)

AlanB5 said...
Hi Zeddy

I live further south than yourself, close to Milton Keynes. I am surprised that the care that you have received on private appears to be sub standard. I had 2 biopsy's from separate private doctors both of whom warned me of infection risk and loaded me with antibiotics before and after the event.

I would reiterate the warnings on SRT. If you are looking for quality of life issues, note that SRT generally goes hand in hand with a hormone treatment that will probably leave you tired, cause hot flushes and can cause osteoporosis. You are effectively menopausal! The hormone therapy is generally administered for 2 years, and it takes a further 6 months to a year for the effects to wear off

I have just finished a course of SRT (5 days out). It was 6.5 weeks long. In my case side effects were fatigue and cystitis - this started early on me and has for the last 5 weeks made it extremely painful to urinate. For the cystitis I was given 2 different drugs, neither of which helped and one of them made me so out of it I had to give up driving for a while. The side effects could worsen for 10 to 14 after completion of SRT, and then take approximately the same time to dissipate as they have been around. So that for me indicates another 7 weeks of taking painkillers to pee!

I got unlucky on the SRT SEs score, bit just wanted to point out the QoL issues you may face on SRT, and would caution to not pull the trigger unless you are sure that it is necessary. 0.02 seems very low compared to the standard 0.2 threshold. I went at 0.11, but there was a definite projectory of increasing detectable PSA

Thank you Alan. Unfortunately doctors in the north east are not as informed as doctors in London area.

I'm sorry to hear about all your suffering as the result of radiation therapy. Your post really scared the life out of me.

I'm very surprised about your hormone therapy. I was under the impression that it was only given for 3 months while receiving radiation. Two years of hormone therapy seems to be a very long time. You will have no means of knowing if radiation had any success. I would certainly ask for a second opinion on this.

Did you receive radiation on full bladder ? Do you mind if I ask in which hospital in London you had your operation?
Posted 7/23/2014 1:55 AM (GMT 0)

rob2 said...
My PSA went from <.01 to .02. My doctor said one more increase I should start SRT. If is still at .02 and I am testing every 2 months. I do believe there is noise in the ultra-sensitive PSA tests and do not plan to start SRT until PSA increases higher. I haven't decided what that number is but it will be <.1 but greater than .02.

Thank you rob2 for your help. I hope you will never need radiation in the future.
Posted 7/23/2014 3:14 AM (GMT 0)

Zeddy said...
I spoke with a lady in 'Cancer Research UK' today. She informed me that this theory was not accepted in England.

LOL! I'm laughing at that lady, whoever she is. Does she really think that the research that demonstrated this would not be true if it were done in the England? The same rules of evidence-based medicine that obtain at Johns Hopkins most assuredly do apply even at Newcastle Freeman Hospital. If you care to pursue it with her, here are some studies:

Gleason 6 Prostate Tumors Diagnosed in the PSA Era Do Not Demonstrate the Capacity for Metastatic Spread at the Time of Radical Prostatectomy

Do adenocarcinomas of the prostate with Gleason score (GS) ≤6 have the potential to metastasize to lymph nodes?

Unless she can show that prostate cancer is a different disease in Brits than in Americans, I'd feel comfortable in assuming that those studies could be replicated in the UK with the same outcome.

At least at University College, London, they seem to believe that true Gleason 6 (and yours was confirmed as true by whole gland pathology) does not bear the hallmarks of cancer:

Do low-grade and low-volume prostate cancers bear the hallmarks of malignancy?

While it is controversial in the US as to whether Gleason 6's at biopsy should be labelled as cancer, it is not controversial anywhere that insignificant amounts of Gleason 6 at pathology have no metastatic potential.

I hope you will forward these studies to her and let us know what her comments are.

- Allen
Posted 7/23/2014 2:10 PM (GMT 0)
Zeddy,

When we have arguments spirited discussions of the extent and timing of treatment here on the forum I am generally to be found in the more/faster quadrant. That said I find your oncologist's suggestion of SRT for a tiny rise in an ultra-sensitive PSA test after an RP for a small, well-contained, Gleason 6 3+3 cancer to be rather bizarre. Yes, your PSA should have gone undetectable after your RP but your PSA scores are miniscule. The lab my oncologist uses here in the US of A reports my PSA as <0.015 (read undetectable) and this is considered to be an ultra-sensitive test. There is no PSA reading you have gotten since your RP that my lab would not have reported as "undetectable".

All that said, for the benefit of other readers who may be looking at SRT for saner reasons, I will pipe up that I didn't find the radiation to be particularly onerous, neither the treatments themselves nor the side effects. It is true that they might have made some of the side effects of my surgery slightly worse, but in terms of quality of life the difference between "totally screwed" and "totally, totally screwed" is not that noticeable, actually. And, as for the androgen deprivation, I must admit to having hated every minute of it. But I have a bad attitude about chemical castration and even I have made it through to the end of it. The two years figure is generally for very high risk guys, such as me, and you Gleason 7 types lurking out there on the Internet can probably plea bargain for a lesser sentence.
Posted 7/23/2014 3:50 PM (GMT 0)

Tall Allen said...

Zeddy said...
I spoke with a lady in 'Cancer Research UK' today. She informed me that this theory was not accepted in England.

LOL! I'm laughing at that lady, whoever she is. Does she really think that the research that demonstrated this would not be true if it were done in the England? The same rules of evidence-based medicine that obtain at Johns Hopkins most assuredly do apply even at Newcastle Freeman Hospital. If you care to pursue it with her, here are some studies:

Gleason 6 Prostate Tumors Diagnosed in the PSA Era Do Not Demonstrate the Capacity for Metastatic Spread at the Time of Radical Prostatectomy

Do adenocarcinomas of the prostate with Gleason score (GS) ≤6 have the potential to metastasize to lymph nodes?

Unless she can show that prostate cancer is a different disease in Brits than in Americans, I'd feel comfortable in assuming that those studies could be replicated in the UK with the same outcome.

At least at University College, London, they seem to believe that true Gleason 6 (and yours was confirmed as true by whole gland pathology) does not bear the hallmarks of cancer:

Do low-grade and low-volume prostate cancers bear the hallmarks of malignancy?

While it is controversial in the US as to whether Gleason 6's at biopsy should be labelled as cancer, it is not controversial anywhere that insignificant amounts of Gleason 6 at pathology have no metastatic potential.

I hope you will forward these studies to her and let us know what her comments are.

- Allen

I am not a cancer expert like you but let me quote other publications to support Zeddy's oncologist's position.

Here are two papers that indicated G6 could evolve into more aggressive types:

http://onlinelibrary.wiley.com/doi/10.1002/cncr.28102/abstract

http://cancerres.aacrjournals.org/content/73/3/1050.full
Posted 7/23/2014 4:47 PM (GMT 0)
Newporter,

I am not an expert, just a lay person like you trying to figure it all out.

I think you missed the point I was making. What I said was that true G3+3 has never been known to metastasize.

If you look at the references I gave you'll see why the first paper you cited doesn't apply: the G6s there were found at biopsy rather than pathology. Up to 30% of biopsy scores are in error and get upgraded by pathology. Both studies I cited found that all cases of mets with G6s were upgraded when experts took a second look. In the OP's case, the G3+3 was identified at pathology, so there is no question.

The other issue, as to where higher grade Gleasons come from, whether they emerge from a parent cancer stem cell or evolve from lower grades, is irrelevant here too. The OPs pathology identified only Grade 3s and none higher. These could not have metastasized.

- Allen
Posted 7/23/2014 5:41 PM (GMT 0)
Newporter,

I've seen that second study before. The one that compares the mutations in Gleason 6 tumors with that of nearby Gleason 7 tumors and concludes that they often come from a common source, and yes, it indicates that there are (probably) some Gleason 3 cells that can turn into Gleason 4 cells. They also suggest that there are other Gleason 3 cells that can't progress and they talk about the mutations that might give them the ability to progress. The inference is that there are some Gleason 6 tumors which, if they appear in a biopsy sample and if you could recognize them as the kind that can progress, then you would strongly suspect that there are Gleason 7 tumors present that were simply missed in sampling and you could consider the man at higher risk.

In theory this leaves a tiny little possibility that Frederick has that sort of Gleason 6 cancer that can progress but it didn't do so before he had his prostate removed. If some was missed it could now decide to progress to Gleason 7 and make trouble. The thing is, Frederick probably had his cancer for a long time before his surgery and if he had the kind of cells that can progress it seems likely that they would have progressed and at least some Gleason 7 cells would have shown up on his post-op pathology report.

So, really, really unlikely, but possible. It can happen in theory. But does it happen?

The studies that Tall linked to try to answer that question. They look at thousands of guys who go on to develop metastatic disease after surgery to see how many of them had Gleason 6 post-op pathology reports. They couldn't find any examples. It still can happen in theory. But nobody has seen it happen yet.
Posted 7/23/2014 6:33 PM (GMT 0)
Hi Zeddy

I had my RP at the Wellington in London, under Mr Declan Cahill. Can thoroughly recommend both. Mr Cahill was really good at explaining the details of the op to both myself and my wife (in separate conversations), and pre and post care was excellent.

The 2 years of hormone therapy was cited by the surgeon, urologist and the radio oncologist. they may be working in concert, but the period seems to be supported by the folk in the US as well. Having said that, there appears to be no clinical evidence that indicates that 2 years is any more effective than 6 months (which I believe is what the NHS would go with), but on the other hand there is also no clinical evidence that 2 years is less effective. As was explained to me by the Radio Oncologist, the Hormone therapy aims to starve and weaken the cancer wherever it is and the SRT mops it up if it is in the prostate bed / lymph nodes. I could I guess plea bargain done to a lighter sentance, but am inclined to stay the course if possible.

The SRT was administered on empty bowel, full bladder and this status was conformed daily by scan preceding the radiation treatment. This pre-scan is not necessarily done on the NHS, and in my opinion is a good reason to get the treatment on the private However this is not cheap - I understand we are talking in the region of £40K here.

I must admit that I was trying to scare you a little with the SEs of the radiation, however I assure you this is an honest account of what I experienced. I am assured that none of the SEs that I have experienced are long term, and am hopeful of starting to climb away from the lows in the next week or so.
Just be cautioned that there are side effects from any treatment and everyone reacts differently. Please be careful about jumping in on a treatment path without researching thoroughly. SRT is expensive, but in my opinion if you are going to go down that route you must get the most up-to-date machinery doing the job, and the prescan is vital.
Posted 7/24/2014 12:38 AM (GMT 0)

Tall Allen said...

Zeddy said...
I spoke with a lady in 'Cancer Research UK' today. She informed me that this theory was not accepted in England.

LOL! I'm laughing at that lady, whoever she is. Does she really think that the research that demonstrated this would not be true if it were done in the England? The same rules of evidence-based medicine that obtain at Johns Hopkins most assuredly do apply even at Newcastle Freeman Hospital. If you care to pursue it with her, here are some studies:

Gleason 6 Prostate Tumors Diagnosed in the PSA Era Do Not Demonstrate the Capacity for Metastatic Spread at the Time of Radical Prostatectomy

Do adenocarcinomas of the prostate with Gleason score (GS) ≤6 have the potential to metastasize to lymph nodes?

Unless she can show that prostate cancer is a different disease in Brits than in Americans, I'd feel comfortable in assuming that those studies could be replicated in the UK with the same outcome.

At least at University College, London, they seem to believe that true Gleason 6 (and yours was confirmed as true by whole gland pathology) does not bear the hallmarks of cancer:

Do low-grade and low-volume prostate cancers bear the hallmarks of malignancy?

While it is controversial in the US as to whether Gleason 6's at biopsy should be labelled as cancer, it is not controversial anywhere that insignificant amounts of Gleason 6 at pathology have no metastatic potential.

I hope you will forward these studies to her and let us know what her comments are.

- Allen

Thank you Allen for your reply and for providing these useful links. I've also seen Mayo Clinic's study about this topic and I neither support or oppose the concept that Gleason 6 cancer cannot metastasize. Obviously I'm very keen to believe that Cleason 6 cannot metastasize and spread as this would give me extreme pleasure and peace of mind, but one has to be realistic and look at this issue from all angles.

You are not the only one who is laughing (at a lady at Cancer Research UK); actually this same lady couldn't stop giggling when I told her where my oncologist, Dr Pedley, was going to send me for a choline PET scan. Apparently, there only 2 or 3 places in England (all in London) who have the facilities to do this scan, but Dr Pedley told me he was going to send me to "the local PET scan Centre"; this centre simply does not exist.

It seems to me that you are a little annoyed and offended by the fact that your theory is not accepted in England. I discussed my conversation with the lady from Cancer Research, with my wife, who is a medical person and has worked at this same Freeman Hospital for many years; she told me that our English system has a unique way of dealing with disease and treatments which is: if we don't research then we won't know, and if we don't know then we won't treat; and of course this is the cheapest way of running the NHS.

We don't accept any research carried out in other parts of the world and we do minimum research ourselves. We keep our stiff upper lip, and suffer in silence. Some of our NHS hospitals are still in the Victorian Age. We don't have a PSA screening programme in England. I believe that USA carries out in excess of 90,000 prostatectomies a year, France does 18,000 a year but England does only 5,000 a year. How can we do any meaningful research with only 5,000 ops a year?

I did not pass your link to the lady at Cancer Research as she is only an advisor/specialist nurse, and she has only told me what her bosses have told her to say.

I apologise for turning this discussion into a political one, as this will have no benefit to anyone.

Frederick

Post Edited (Zeddy) : 7/23/2014 6:44:23 PM (GMT-6)

Posted 7/24/2014 12:40 AM (GMT 0)

PeterDisAbelard. said...
Zeddy,

When we have arguments spirited discussions of the extent and timing of treatment here on the forum I am generally to be found in the more/faster quadrant. That said I find your oncologist's suggestion of SRT for a tiny rise in an ultra-sensitive PSA test after an RP for a small, well-contained, Gleason 6 3+3 cancer to be rather bizarre. Yes, your PSA should have gone undetectable after your RP but your PSA scores are miniscule. The lab my oncologist uses here in the US of A reports my PSA as <0.015 (read undetectable) and this is considered to be an ultra-sensitive test. There is no PSA reading you have gotten since your RP that my lab would not have reported as "undetectable".

All that said, for the benefit of other readers who may be looking at SRT for saner reasons, I will pipe up that I didn't find the radiation to be particularly onerous, neither the treatments themselves nor the side effects. It is true that they might have made some of the side effects of my surgery slightly worse, but in terms of quality of life the difference between "totally screwed" and "totally, totally screwed" is not that noticeable, actually. And, as for the androgen deprivation, I must admit to having hated every minute of it. But I have a bad attitude about chemical castration and even I have made it through to the end of it. The two years figure is generally for very high risk guys, such as me, and you Gleason 7 types lurking out there on the Internet can probably plea bargain for a lesser sentence.

Thank you Peter for your post, it was most useful. It's not only my oncologist's suggestion which is bizarre, it is more bizarre that he is proposing to commence SRT at a PSA level of 0.02, when his hospital is incapable of measuring PSA level below 0.03 ! (My ultrasensitive PSA is analysed at another hospital in London).

Frederick

Post Edited (Zeddy) : 7/23/2014 6:43:34 PM (GMT-6)

Posted 7/24/2014 12:50 AM (GMT 0)

PeterDisAbelard. said...
Newporter,

I've seen that second study before. The one that compares the mutations in Gleason 6 tumors with that of nearby Gleason 7 tumors and concludes that they often come from a common source, and yes, it indicates that there are (probably) some Gleason 3 cells that can turn into Gleason 4 cells. They also suggest that there are other Gleason 3 cells that can't progress and they talk about the mutations that might give them the ability to progress. The inference is that there are some Gleason 6 tumors which, if they appear in a biopsy sample and if you could recognize them as the kind that can progress, then you would strongly suspect that there are Gleason 7 tumors present that were simply missed in sampling and you could consider the man at higher risk.

In theory this leaves a tiny little possibility that Frederick has that sort of Gleason 6 cancer that can progress but it didn't do so before he had his prostate removed. If some was missed it could now decide to progress to Gleason 7 and make trouble. The thing is, Frederick probably had his cancer for a long time before his surgery and if he had the kind of cells that can progress it seems likely that they would have progressed and at least some Gleason 7 cells would have shown up on his post-op pathology report.

So, really, really unlikely, but possible. It can happen in theory. But does it happen?

The studies that Tall linked to try to answer that question. They look at thousands of guys who go on to develop metastatic disease after surgery to see how many of them had Gleason 6 post-op pathology reports. They couldn't find any examples. It still can happen in theory. But nobody has seen it happen yet.


Very interesting ! Thank you
Posted 7/24/2014 1:03 AM (GMT 0)

AlanB5 said...
Hi Zeddy

I had my RP at the Wellington in London, under Mr Declan Cahill. Can thoroughly recommend both. Mr Cahill was really good at explaining the details of the op to both myself and my wife (in separate conversations), and pre and post care was excellent.

The 2 years of hormone therapy was cited by the surgeon, urologist and the radio oncologist. they may be working in concert, but the period seems to be supported by the folk in the US as well. Having said that, there appears to be no clinical evidence that indicates that 2 years is any more effective than 6 months (which I believe is what the NHS would go with), but on the other hand there is also no clinical evidence that 2 years is less effective. As was explained to me by the Radio Oncologist, the Hormone therapy aims to starve and weaken the cancer wherever it is and the SRT mops it up if it is in the prostate bed / lymph nodes. I could I guess plea bargain done to a lighter sentance, but am inclined to stay the course if possible.

The SRT was administered on empty bowel, full bladder and this status was conformed daily by scan preceding the radiation treatment. This pre-scan is not necessarily done on the NHS, and in my opinion is a good reason to get the treatment on the private However this is not cheap - I understand we are talking in the region of £40K here.

I must admit that I was trying to scare you a little with the SEs of the radiation, however I assure you this is an honest account of what I experienced. I am assured that none of the SEs that I have experienced are long term, and am hopeful of starting to climb away from the lows in the next week or so.
Just be cautioned that there are side effects from any treatment and everyone reacts differently. Please be careful about jumping in on a treatment path without researching thoroughly. SRT is expensive, but in my opinion if you are going to go down that route you must get the most up-to-date machinery doing the job, and the prescan is vital.

Hi Alan,

Top hospital and top surgeon. Mr Karim also operates at Wellington. He is the trainer and examiner for robotic surgery.

Thank you for the useful info ... I've read that the side effects of radiation will get worse by the passage of time. I hope this is not true ...
Posted 7/24/2014 1:12 AM (GMT 0)
Zeddy,
I'd describe my attitude as more bemused than offended. I've encountered that "not invented here" attitude before. While I wouldn't brag about the American PSA screening system and the explosion in RPs here, we are making some changes and trying to balance the trade-offs. We often look to Europe to see how they are handling the same issues.

We don't have many places that do C-11 Choline PET scans here in the US either. In fact, only the Mayo clinic is doing them and charging a pretty penny for it. There are maybe 5 more places that are doing C-11 Acetate PET scans, also not insurance covered. I'm aware of several sites throughout Europe that do them, as well as other novel imaging.

- Allen
Posted 7/24/2014 7:47 AM (GMT 0)
I had a C-11 Choline PET scan at the Churchill in Oxford. The medical insurance was loathe to allow this at first and requested a standard MRI scan 1st. Both showed no evidence of the cancer, which to be honest is what the Radio Oncologist expected, with a PSA of 0.11. This was a good news/bad news scenario. The good news was that there was no evidence of a serious progression, the bad news was that we know it's in there but we just don't know where it is.

I strongly suspect that the NHS will not pay for you to have one with such a low PSA, so you may have to pay for that yourself. I am not a medical professional, but based on what I was told and the eventual outcome I would expect that the PET scan would not show anything in your case. These treatments are expensive, and I get the impression you are paying from your own pocket, so you may want to conserve your funds a bit.

The lingering effects and duration of the radiation SEs was one of the factors that prompted me to go the RP route. Disappointed that I have had to go through both treatments, but we move on.
Posted 7/24/2014 10:19 PM (GMT 0)

Tall Allen said...
Zeddy,
I'd describe my attitude as more bemused than offended. I've encountered that "not invented here" attitude before. While I wouldn't brag about the American PSA screening system and the explosion in RPs here, we are making some changes and trying to balance the trade-offs. We often look to Europe to see how they are handling the same issues.

We don't have many places that do C-11 Choline PET scans here in the US either. In fact, only the Mayo clinic is doing them and charging a pretty penny for it. There are maybe 5 more places that are doing C-11 Acetate PET scans, also not insurance covered. I'm aware of several sites throughout Europe that do them, as well as other novel imaging.

- Allen


Tall Allen,

I'm glad that I bemused you ...
Regarding the "not invented here" attitude = "I know it all" attitude.

I'm grateful for the info that you provide for people like me. You are a knowledgeable man.

If you are looking to countries like France and Germany to find out how they are dealing with their problems, well and good, but please don't look at UK; we are a bad example ...

Beside these political issues Allen, do you have any information about sPSA doubling time? Is the doubling time in sPSA regarded the same as normal PSA? Mine has doubled in 6 months from 0.006 to 0.013 .. how does this translate into the normal PSA doubling time? Thank you ..

Frederick
Posted 7/24/2014 11:17 PM (GMT 0)

AlanB5 said...
I had a C-11 Choline PET scan at the Churchill in Oxford. The medical insurance was loathe to allow this at first and requested a standard MRI scan 1st. Both showed no evidence of the cancer, which to be honest is what the Radio Oncologist expected, with a PSA of 0.11. This was a good news/bad news scenario. The good news was that there was no evidence of a serious progression, the bad news was that we know it's in there but we just don't know where it is.

I strongly suspect that the NHS will not pay for you to have one with such a low PSA, so you may have to pay for that yourself. I am not a medical professional, but based on what I was told and the eventual outcome I would expect that the PET scan would not show anything in your case. These treatments are expensive, and I get the impression you are paying from your own pocket, so you may want to conserve your funds a bit.

The lingering effects and duration of the radiation SEs was one of the factors that prompted me to go the RP route. Disappointed that I have had to go through both treatments, but we move on.

Thanks Alan,

I was also told by Mr Karim and The Royal Marsden that C - 11 can't detect anything below 0.1 PSA.

C - 11 cost £2000 privately at UCL (one week waiting list), but under NHS I was told that it could take 6 months .. !

Dr Pedley told me that he will refer me for a C - 11 if my MRI is positive. How much of that is true, only God knows ..
Posted 7/25/2014 12:05 AM (GMT 0)
I meant her attitude bemused me, not yours.

What is sPSA? PSA doubling time has never been validated as an indicator for low values of PSA detected by ultrasensitive tests. Another reason to avoid them -- meaningless at low values, and needless at higher values where PSA kinetics are meaningful.

C11 Choline is useless for PSAs under 2.

- Allen
✚ New Topic ✚ Reply
12