PSA rising, advice please

[colj_uk]

Hi,

New to this forum and looking for advice following rises in my PSA level over recent months.

I live in the UK just outside London. I was diagnosed Aug 2007 aged 54 same time as type II diabetic via routine PSA blood test by GP, no symptoms and scans clear. Advised by Urologist and Oncologist that due to the high PSA of 136 the cancer had spread and HT was my only option.
Gleason 10 (5+5), Staging T2N0Mx. 14/14 cores postive. Both lobes but had not grown thru wall with prostate slightly enlarged.

Cyprostat 1 month and started HT (Zoladex) started 17th Sept 2007
PSA 19th Nov 2007 1.0, testoserone 0.4.
STAMPEDE trial started 7th Dec 2007 - HT + Celecoxib (2 x 200mg twice a day)
PSA 19th Dec 2007 0.5
PSA 11th Jan 2008 0.3
PSA 22nd Feb 2008 0.3
PSA 4th April 2008 0.3
PSA 16th May 2008 0.4 and repeat bone scan clear
PSA 8th August 2008 0.6
Testosterone 0.8
PSA 31st October 2008 1.1

After being advised that due to the fantatic response to HT they should be able to keep things at bay for some years my PSA started to rise after only 8 months which is not even an average response. Since being diagnosed I have over the months increased exercise (run 3/4 times a week and swim twice), cut out read meat and diary (switched to soya). large amounts of fruit and veg and red wine with occasional beer

My Oncologist does not intend to change my treatment until my PSA reaches 15-20, probably 20 has she feels it is better to keep Casodex in reserve and then estrogen and chemo. When pushed she said they may consider a steroid instead of estrogen. I have written to the Royal Marsden in London who have indicated a more open and experimental approach but most surprisingly of all they stated they may consider radiotherapy to my prostae as my scans have been clear. I have now being referred to the Royal Marsden for a second opinion.

Naturally I now rather confused and worried. Why has my prognosis changed so dramatically in the last 6 months (has my diet changes and exercising had an adverse affect, I have read that soya can cause a problem) and if, as my PSA level indicates, my cancer has spread from the prostate why would RT be considerd now (my Oncologist can not undestand this and would not consider it.

Any advice and comments would be greatly appreciated.


Thanks Colin

[ralphv]

Hello Colin,
Welcome to the site. You were diagnosed young and with an aggressive cancer (GS 10). That alone should be a red flag to treat your cancer aggressively. Your response to monotherapy HT (Zoladex) has been poor. Waiting for a PSA of 15 or 20 in my view seems poor medical advice. What can possibly be the advantage of such tactic? Why allow the cancer to grow untreated?

In reality and because of your high PSA at diagnosis and GS 10 you have a high risk of harboring (at this point occult) metastatic disease. When localized treatment is offered in such cases there is a small potential for "cure". This said, the effect of RT on the tumor volume in the prostate gland could have a benefit. Reducing a large volume of aggressive cancer (and the oldest cancer present) by radiation is known as debulking and could provide the patient with a chance to slow down disease progression. At your age this is an important issue. Depending on the expertise of the practitioner and the type of RT used (IMRTis the latest), RT's side effects could be minimal, but the potential for SEs exists. Be aware that high GS disease is resistant to RT and usually higher doses are needed to be effective. The higher the dose, the higher the side effect risk, but also the more effective cancer kill.

At his point, based on your response to Zoladex, you should consider adding Casodex to block androgens produced by the adrenal gland that can promote cancer growth. Another important addition would be a 5-alpha reductase inhibitor (such as Proscar or Avodart) to inhibit the formation of dihydrotestosterone which is the most potent androgen to promote prostate cancer growth.

Please do not take this as medical advice. I am not a medical doctor. This is just information for you to consult with your doctors and for you to participate in your treatment decisions. All things mentioned here have been used in patients with similar disease characteristics as yours.

Wish you the very best outcome with whatever you do. Again, welcome to the site and thanks for sharing with us,

RalphV :heya:

[JohnC]

Colin:

Welcome to the club no one wants to join. Ralph offers seasoned advice. In addition I would say that for men with confirmed T3 and T4 disease radiation has shown superior performance than with hormone therapy alone. A search using such terms as T3, T4, debulking, EORTC, radiation, and so on will turn up many examples. If it were me, and I had a chance at local control with radiation, I would seriously consider it. A psa of over 100 with G 10 would strongly suggest systemic disease. Notwithstanding, the success of local control can have long term impact. This will be so only with a top doctor and up to date equipment and practices. I wish you only the very best.

JohnC

[colj_uk]

Thanks Ralph and John for the advice.

A year ago on learning that HT only works for a while and after quickly reading Charles Myers book I strongly questioned my Urologist and Oncologist on why no other treatment was being considered. The Urologist stated that the Myers book was only one person's viewpoint and that Maximum Androgen Blockade was not proven. No Urologist in the world would operate due the potential side affects and the fact that it had spread and could not be cured. The Oncologist agreed at a seperate meeting at another hospital and stated as the HT was working so well why would we do anything different. RT would only be used for hot spots. I was satisfied that I had two opinions who both agreed that HT was the only option (and the area committe of experts who meet to discuss new cases) although I later found out that one works for the other.

However, over the last year I have learned what a contraversial subject prostate cancer is and the radically varying opinions on treatment. HT is not working now and my Oncologist does not beleive there is any advantage to adding in Casodex before PSA reaches 20 as she considers it is not spreading or dangerous below this level. She also believs the PSA increase is coming from all areas and not just the prostate (I recall Charles Myers thinking the opposite). She still states she will not consider RT to the prostate.

I await the 2nd opninon with Professor Dearnaley at the Royal Marsden for which you have provided me with plenty to discuss.


Thanks again Col

[JohnC]

Colin:
I believe you refer to comments by Myers about the study done by E. David Crawford, et al, from the 1980's. This study followed men treated with ADT alone and one finding was that the prostate was the source of androgen independence in a majority of cases. This follows the thinking that the oldest cells are those which are the most mutated and thus most likely to reach androgen independence earliest. These would more often be the cells in the prostate itself, rather than those disseminated. The known cost, and likely risk for side effects of treatment of the local area, must be considered in weighing any potential benefit.
I am not concerned about soya products.

Regards.

JohnC

[ralphv]

Hello again Colin,
It is true that maximal androgen deprivation has not been proven by clinical trial, but to tell a 55 yo man with a PSA doubling time of 2 months that his cancer is not spreading is wrong and incredible. PSADT under 3 months are considered aggressive and call for action. Waiting for a PSA of 20? What medical literature supports that? There is a direct correlation between PSA level and tumor load. The higher the tumor load the higher the PSA tends to be. Why allow the tumor to grow when it is known that adrenal androgen and testosterone metabolites like dihydrotestosterone drive PCa growth? At the present rate, by June '09 your PSA will be close to 20 ng/ml. Adding maximal suppression to Zoladex might not work, but with potentially few side effects what is there to lose?

The decision might be different depending on patient's age. Still it should be the patient's decision at any age. Debulking the oldest, most mutated tumor load could be helpful in improving survival as this is done under maximal androgen deprivation to effectively promote maximal cancer cell death. High dose (80 Gy) RT preferably with IMRT could accomplish that with less side effects.

Stay positive and wish you an effective consult with Dr. Dearnaley at RM,

RalphV :heya:

[Esteban]

Welcome, Colin.

You have received excellent advice.

I'll just add this information on a medical oncologist who is strongly recommended:

Professor R T D Oliver
Consultant Medical Oncologist
Holly House Hospital
High Road
Buckhurst Hill, Essex
IG9 5HX
T: 0845 257 8522
F: 020 8554 4895
E: u.d.somasundram@qmul.ac.uk

The London Clinic
20 Devonshire Place
London
W1G 6BW

Regards,

Steve J
(Esteban)

"There is NOWHERE in oncology where waiting for the tumor cell
population to increase (and to mutate) is in the better interests of the
patient."
--Stephen B. Strum, MD
Medical Oncologist
PCa Specialist

[MacRob]

Hello Col,
Good to see you joined up & I just wanted to add my welcome.

You have already received excellent advice as I knew you would :angel: .

As I have mentioned to you before, I cannot see why the wait for a psa of 20. My Uro/Onco agreed that I could add Casodex as my psa had risen to about 8 ( in addition to the Zoladex). In fact, there were mutterings about chemo at a psa of 15 at one discussion ( which got my attention ! ).The Casodex worked well for me.
There were then further mutterings about how this worked better than they expected.

It seems to me that some of us can still surprise the hospitals who look at statistics perhaps a little too often.

Regards
Rob

[Manuel]

Hello, Col. First of all I'd like to welcome you aboard and for sharing your experience with us. You've received excellent advice to which there is little to add.

Unfortunately nothing or very little is written on stone as far a Prostate Cancer is concerced. But there is ONE thing that I would tell you for sure: a doctor in YOUR situation would not see his own protate cancer grow without trying to take prompt action. Adding other hormonal treatments to your current treatment may be an option.

Why to wait?. Would your doctor wait should he be in YOUR situation?

Some doctors would even recommend in your situation not only adding Casodex and Avodart to your current regime, but also to check your prolactine levels and if elevated, to use a drug to reduce that elevated prolactin level:

-----------------------------
The use of prolactin inhibitors in PC patients is based on work showing that prolactin increases the number and sensitivity of androgen receptors. Rana et al. used the prolactin-suppressing drug bromocriptine along with orchiectomy and hydrocortisone (regimen A) in treating advanced PC. Regimen A was compared to orchiectomy plus Eulexin and to orchiectomy alone. Regimen A resulted in a 61% suppression of primary prostate growth, compared with only a 48% reduction with orchiectomy and Eulexin alone. After 36 months, 40% of the group receiving Regimen A experienced disease progression, compared with 60% in the orchiectomy-only group (Rana et al., Eur. J. Cancer, 1995).

PC patients should have their prolactin levels checked via a blood test drawn in the morning. If your prolactin levels are elevated, you should consider one of the following prescription drugs:

* Bromocriptine, 5 mg 1 to 2 times a day
* Dostinex, 0.5 mg twice a week

Check your prolactin levels again in 30 days to make sure the drug you choose is, in fact, suppressing prolactin released into your blood from the pituitary gland. Dostinex is the newest and easiest drug to use since it has fewer side effects than the older drugs, is more effective in suppressing prolactin, and requires dosing only twice a week.

http://www.lef.org/protocols/prtcl-093a.shtml
-------------------------------------------------

Keep us updated. Best of luck.

PD: let me add here a wise remark posted by Ralph on another thread concerning even another possible addition -not written on the stone either- to your current regime:

... the importance of the research expressed in the conclusion:

The correlation of monoamine oxidase-A expression with prostate specific antigen and the percent of grade 4/5 cancer suggests that monoamine oxidase-A may contribute to growth of high grade cancer and that antidepressant drugs that target monoamine oxidase-A may have applications in treating prostate cancer.

viewtopic.php?f=18&t=1484

[colj_uk]

Thanks all for the replys ansd advice.

I now have an appointment booked to see Professor Dearnaley at the Royal Marsden on December 1st armed with information and much to discuss.

Steve - thanks for the recommendation of Professor Oliver. May I ask how you are aware of him? I am considering a 3rd opinion and I am coming to the conclusion that I need to see the best I possibly can.

Manuel - thanks for your post, I have never come across or heard mention of prolactine levels !! with regard to Ralph's quote on monoamine oxidase-A would Diazepam have a possible impact on prostate cancer?


Col

[Esteban]

Steve - thanks for the recommendation of Professor Oliver. May I ask how you are aware of him? I am considering a 3rd opinion and I am coming to the conclusion that I need to see the best I possibly can.

He is recommended by a famous medical oncologist here in the USA, Stephen B. Strum, MD.

In addition to his 25+ years as a PCa specialist, Dr. Strum is co-author of _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide." It is available from the Prostate Cancer Research Institute website http://prostate-cancer.org/index.html and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver, as I very well know.

Regards,

Steve J

"We must tailor the treatment to the nature of the disease. We must listen to the biology."
-- Stephen B. Strum, MD
Medical Oncologist
PCa Specialist

[colj_uk]

Hi guys and happy new year,

Update following my 2nd opinion at Royal Marsden London.

The 1st letter was sent Dec 4th after my consultation. In summary he thought my case has been very unusual, initial PSA of 136, Gleeson 5 + 5, 14/14 cores positive but no convincing evidence of metastases on bone scan (initial bone scan showed suggestion of minor areas of abnormaility but were anything but convincing and subsequent bone & Xray scans showed no confirmatory evidence of mets). Diagnosis is documnted as very high risk presumed metastastic. He noted though that my bone marrow looked patchy on MRI of my pelvis.

If progressive rise in PSA is documented his inclination would be to add in Casodex 50Mg daily as it is unlikely to have any additional toxity whilst I am entrirely asymptomatic. He also discuses if there is any role for localised treatment whilst understanding that it is highly unlikely to be truly localised, it is appropriate that I carry on with systemic options for the time being. However at the time of biochemical failure there were to be no evidence of disease out side the prostate there might be sensible option to consider having the advantage of relatively low toxity and procuring long term local control of disease (if repeat scans are clear).

The 2nd letter sent on the 17th Dec stated that the review of scans shown small volume organ confined disease on the MRI scan with no evidence of lympth node involvement. Although the the marrow signal was heterogeneous it was regarded as within normal limits and no evidence of infiltration. Repeat PSA was identical to the last test 1.1 taken a month ago and therefore very reasonable to carry on with Zoladex alone. Interestingly he mentions the Swedish SPCG7 study which will report fully soon (HT + RT for localised PCa). If the initial results are confirmed then in his opinion it ought to be practice changing.

I have since had two PSA tests, the first from a BUPA checkup a week after the Royal Marsden test which came back as 0.9. The 2nd one via my GP a week later as I have switched to monthly Zoladex and wanted to check PSA a few days after implant. This came back down again to 0.8 and T of 0.4 (down from 0.8). So my PSA has come down from 1.1 to 0.8 in 6 weeks after increasing from 0.6 to 1.1 in 3 months. I have made some lifestyle/diet changes (very little alcohol, work from home-less stress, only eat fish and some veg only meals, execercising 'but not intetionally; a little less of late) but I was only expectinng another rise in PSA. either way I am over the moon that it looks like it is going dowm again!!


Thanks Col

[ralphv]

Hi Col and happy and healthy New Year to you!
What follows is what I would do if confronted with your situation. Do not take this as medical advice and understand that my decision is not necessarily what you might decide at this point. It is what I would do in your shoes based on what I know about the disease and its treatments.

Based on diagnostics. High PSA, high Gleason Score and multiple positive samples with no visible metastasis (although almost certainly a high probability of micromets), my option would be to seriously consider localized treatment in the form of targeted IMRT (highest possible dose since there is a high correlation between dose and tumor kill) to kill the most mutated and oldest tumor load affecting my future health. This while undergoing ADT consisting of adding Casodex and Proscar (or Avodart) to Zoladex

Obviously this combination treatment can affect QOL, but I look at the benefit/risk ratio and I believe that benefit (survival) is more important (for me). I am a believer in debulking (getting rid of the oldest and more potentially damaging tumor load) to be able for my immune system to fight whatever metastatic small tumor volume remains. I would remain hormonally suppressed (before, during and after RT) for at least 12 to 16 months to effectively slow down progression and promote as much cancer cell death as possible.

Cheers,

RalphV :wave:

[colj_uk]

Hi al,

I have been back to visit Prof Dearnaley at the Royal Marsden on my PSA reaching 2.2 (after dropping to 0.8 in December). I have repeat CT and bone scans booked and subject to the scans still being clear is has recommended RT which he said he would do if he was in my shoes and states that the only problem is the inconvenience of having the RT with side affects minimal. Is this because my cancer is small volume and felt completely normal when he examined it inon Dec 1st?, I thought there is always a risk of side affects with RT. He does not think having RT done at the Marsden is practable as I live a 2 hour trip away from the hosp and should have it done locally.

So I need to plan where is the best centre and type of RT (without tempting fate with the scan results) taking into consideration travel and the fatigue. I am influenced by a story my practice nurse who told me of a young female doctor at my practice who travelled every day to the Marsdem dispite the journey for her RT and chemo and is convinced it saved her life.


Col

[ralphv]

Hello Col,
Please read my response to you back in November (at the start of this thread)because it still applies. Sure RT can have side effects, but in your case it can reduce the tumor burden and slow things down. With a GS 10 and a PSA of 136 at diagnosis you have aggressive cancer. The fact that nothing shows in the imaging tests is good news. Still, do not lower your guard.

Seek and determine which facility near you has the best RT equipment and which practices image guided intensity modulated radiation treatment (GIMRT). This modality has less propensity to cause side effects and still if applied at the proper dose be highly effective in killing tumors. You have a rapidly doubling PSA. This is a high risk indication of disease progression. You should have your testosterone measured and if at castrate level (0.7 nmol/L) then you have become refractive. If testosterone is 1.7 nmol/L or higher you should consider adding Casodex and Avodart to your current protocol. In your case the radiation treatment will serve to reduce tumor burden and could possibly improve survival while you are on maximal hormone suppression.

Wish you the very best possible outcome. Cheers,

RalphV :ralph4: :ile:

[JohnC]

Colin:

Welcome back. It appears that your advisor at Marsden is taking into account your inconvenience and time and cost of travel in the recommendation to look for a local radiation clinic/hospital. He considers the treatment application to be equal wherever delivered. I hope that is his motivation. With no other information to go on it is impossible for me, or anyone unfamiliar with the radiation facilities at the two locations you refer, to make a recommendation. The advice from the practice nurse implies a difference in skills or equipment, though the chemo factor and the second or third hand reference can deliver an opinion which may be opposite of that originally expressed. Is a consultation/visit to the local facility possible? Would it provide information that would assist in this decision? No man should be treated with EBRT without the Intensity Modulated (IMRT) option.
I can say that for myself, when looking at the treatment options I considered, that the skill, expertise, experience, and reputation of the provider and facility were utmost in my mind. I was willing to make significant accommodations so that my later regret was reduced to a minimum, though not to zero. I was willing to pay, in time and wallet, to increase those factors that may contribute to my perception of the chance of success. I also accept that I will never know if my choices made any difference.
In my case my first treatment recommendation came from my local diagnosing urologist but I later was treated at a National Cancer Center, which is the reverse of your situation, as I understand it. This further clouds the comparison.

[colj_uk]

[code][/code]
Ralpth/John,

Thanks for the quick response and advice.

The Royal Marsden is a leader in the field of cancer treatment and research and has an execellt reputation. It has IMRT and IGRT facilities.

My local hospital (Queens) is new opened in 2006 so has not had time to establish a reputation. It is one of three specialist cancer centres for the North East London Cancer Network and offers IMRT. I have enquired whether it has IGRT facilities and if there are other centres who do in my area (London) which I think there must be.

I have appointment at Queens on April 24th with my oncol and can discuss RT facilities. She is trained in radiotherapy and presumably will plan any RT so I am not sure I will get an imdependant viewpoint. She was totally against RT but has an high opinion of the Prof at the Marsden and will follow his recomendations.

I see Prof Dearnaley at the Marsden on 6th May to discuss scan results and hopefully RT (I think he is going to add Casodex no matter what). I will enquire as to the exact reason he does not think RT at the Marsden is practicle (presumably tiredness and the travelling) and why he thinks side effects are minimal (dependant on IGRT facilities).

I am assuming that the smaller the tumour the less the tendancy would be for side affects but undertsand that IGRT offers the best chance to minimise the risk.

I think my practice nurse was making the point that travelling to the Marsden is a long journey but they are known to be one of the finest cancer centres and carry out experimental treatment options. Probably the main point being the expertise of the staff.


Col

[Larry]

Hi Col.
It is by no means inevital that you will suffer from fatigue whilst having RT. I myself had 32 sessions and every week I had an appointment with a clinical oncologist to check my side effects etc. During these consultations I was always asked about fatigue and when I said none were evident I was told that perhaps I did not notice that I was fatigued, when you finish the course you will find you have a burst of energy then you will realise that you were fatigued.
I never got the burst of energy and feel that fatigue was not a side effect for me. So I would suggest you have your RT where you feel is the best location for you, if that involves a little travel etc, I would go for it. Its better by far to be having what you think is the best administration of RT even if it may be a little awkard for you in respect to travel to that location.
Larry

[colj_uk]

Thanks Larry,

That is very useful feed back on fatigue for RT.

I have since found out that both my local and the Royal Marsden hospitals offer IGRT so it is now a question of the experise of staff I need to consider.


Your reply has been very helful, Col

[Larry]

Hi Col.
Good luck in your choice of which hospital is the one you believe to be best. One thing about RT that I had, that was urinary urgency, when I had to go I really had to go. but 2 weeks post RT things were back to normal. It would be prudent to know the locations of all availble toilets on you hospital route, locations such a Macdonalds, Burger King and bars etc they will sure come in handy. If you are driving or being driven take a container with you in the auto/car, something like an empty milk container a 2 litre one is ideal.
That was my experience, the container was an essential item in my case, I drove 17 miles each way throughout my sessions, driving and concentration was no problem.
Larry

[Manuel]

ColJ: best of luck and best outcome. Keep in touch.

[colj_uk]

Thanks Larry/Manuel,

Met with my Oncol on Friday. PSA up again to 2.6, doubled in the last 13 weeks. She advised that my local hosp provide 3D-Conformal RT, it has IMRT but it is currently not used. The other well known hosp where she works St Barts in London has IMRT but only uses this for complex cases as they do not think there is an advantage over 3D-conformal for standard cases (my tumor is small volume). She is checking the Harley ST clinic in London for IMRT/IGMT, the website states that they are currently upgrading to IGRT.

I meet with Proff Dearnaley at the RoiyalMarsden on 6th May to discuss bone and CT scans results and 'IF clear' RT. I am advised that the RM do have IGRT but will confirm and ask the Proff for his recommendations. My Oncol confirmed that fatigue is usually only a problem towards the end of RT so I am not writing off having it done at the Royal Marsden (a 2 hour journey) although the possible side affects will be a consideration for the journey (bowels, urinating).


Thanks Colin

[ralphv]

Hi Colin,
I must be missing something. You say your tumor volume is small and yet you reported an initial PSA of 136, Gleason 5 + 5 and 14/14 cores positive. Is this correct?

If so, this is not a slight case of PCa or small volume cancer. Such cases require a higher radiation dose (because high Gleason tumors are resistant to radiation therapy) and to obtain better results in cancer kill with less potential side effects image guided IMRT is much better than 3D Conformal radiation.

Wish you the very best,

RalphV :ralph4: :ile:

[colj_uk]

Hi Ralph,

Yes my initial PSA was 136 and repeat by urologist 131. Biopsy reported Gleason score of 5 + 5 and 14/14 cores with 70% involvement overall on the left side and 30% on the right. The ultrasound scan showed slightly enlarged prostate and the MRI taken some 10/11 weeks after starting HT (required for clinical trial) reported small volume organ confined desease.

The Royal Marsden so far appears to be the only option so far for IGRT which is a 2 hour journey for me and clearly not very advanced in the UK.


Cheers Colin

[MacRob]

Hi Col,
With the more accurate R/T , side effects are likely to be reduced.
It was the wider, less accurate EBRT which gave me problems.
And even if bowels/urinary problems do kick in, one can always get pads, a bottle in one's pocket etc.
Far better to get the best treatment as it is a once only treatment. So go for the best available.
Is there a hostel nearby if you had to stay overnight ? Unlikely, but worth preparing.

Regards
Rob

[colj_uk]

Thanks Rob,

Find out next Weds if RT is a on following scans I had done yesterday.

IF, IF it is on - I think I will be pushing for IGRT at the Marsden which looks like my only option.


Thanks Col

[colj_uk]

Hi all,

Bone and CT scan results came back clear so its on for RT. Unfortunately did not see the usual Professor at the Royal Marsden but another one of the team a Dr Parker. He prescribed Casadex 50mg as well as RT.

Surprisingly he advised that the RM would not offer IGRT as it is unproven that it works. Definately could offer 3D-Conformal amd possibly IMRT. His view was that wherever I have RT and whatever method would be much of a muchness and would not affect the risk of side affects. I really don't understand why the UK is so behind with RT and why hospitals have the latest equipment but consider IMRT and IGRT experimental.

With regard to the strength of RT Dr Parker advised that they use the highest amount for the minimal perm side affects (no matter the grade of the cancer), 5% chance of urilnal/bowell and rather worryingly a third of men are impodent. My local hosp quotes 10/15% urilnal/bowel side affects, does that mean I wonder that they use higher strength XRays than the RM?


Col

[Larry]

Hi Col.
I really do not know why your local hospital is quoting 10 to 15% as opposed to the Royal Marsden, its interesting. I was under the opinion that 5% was about the normal regardless of the hospital. Do you know how many sessions were suggested by both hospitals and the total number of Guy that they intended to zap you with.
As a rough guide double the number of sessions to get the total Guy count, as each session generally consists of 2 Guy. There is new proceedures being tried where more guy is applied and less sessions, so doubling the sessions is only a very rough guide. Therefore you need to ask your clinical oncologist about the total dosage intended otherwise its guesswork.
Best wishes for a successful RT program.

[colj_uk]

Thanks Larry,

My local hospital will provide 3D-Conformal over 37 sessions with a total of 74 GUY. My Oncologist is now quoting 5 to 10% risk of urinary/bowell side affects when I sopke to her today.

Have not been able to speak directly to Proff at Royal Marsden but he left a message today to advise that my PSA taken last Weds is 3.9 (I did play golf the day before and went swimming the day before that as I was not expecting to have a test done, I know exercise can affect PSA) and that I should start taking Casodex (which I have done) and have RT done locally.

The other Doctor at the Royal Marsden recommended RT to the prostate and possibly to my Lynth Nodes (I think, maybe I got that wrong but definately another area outside the prostate). Would this be usual as the CT scan was clear?


Thanks Col

[colj_uk]

Since spoke to Prof D at Royal Marsden and he reccommends I have RT done at my local hosp. RT to the prostate and the surrounding area but not the lynth nodes, it could be argued that HT has treated my pelvic area. RM do a variation on 3D-Conformal which could be argued is a from of IMRT. 37 sessions with a total of 74GUY.

I got the following response from a major Prostae Cancer charity in the UK:

Currently 3D conformal radiotherapy is the standard treatment for men with localised prostate cancer. Although there is evidence from randomised controlled trials to provide evidence that conformal radiotherapy reduces toxicity compared to conventional radiotherapy at a similar dose, there is currently no similar level of evidence to compare 3D conformal with IMRT radiotherapy. Generally IMRT is only used in this country as part of a clinical trial or if a wider field of radiation is being given, for example if a pelvic lymph node is also being treated. Wherever your treatment is performed, NICE (National Institute for Health and Clinical Excellence) guidance, suggests a minimum dose of 74Gy to the prostate at no more than 2 Gy per fraction. Based on the same doses of radiation given, side effects should not alter depending on the centre you attend.

[ralphv]

Hi Colin,
That is not what RM has published in the recent past:

1: Eur J Cancer. 2005 Apr;41(6):908-21.

Technological advances in radiotherapy for the treatment of localised prostate
cancer.

Mangar SA, Huddart RA, Parker CC, Dearnaley DP, Khoo VS, Horwich A.

Academic Unit of Radiotherapy and Oncology, The Royal Marsden NHS Foundation
Trust and The Institute of Cancer Research, Downs Road, Sutton SM2 5NG, UK.
stephenmangar@supaworld.com

There is good evidence that radiation dose escalation in localised prostate
cancer is associated with increased cell kill. The traditional two-dimensional
(2D) technique of treatment planning and delivery is limited by normal tissue
toxicity, such that the dose that can be safely delivered to the prostate by
external beam radiotherapy is 65-70 Gy. Several technological advances over the
last 20 years have enhanced the precision of external beam radiotherapy (EBRT),
and have resulted in improved outcomes. The three-dimensional conformal
radiotherapy (3D-CRT) approach reduces the dose-limiting late side-effect of
proctitis and has allowed for dose escalation to the whole prostate to 78 Gy.
More recently, intensity modulated radiotherapy (IMRT), an advanced form of
conformal therapy, has resulted in reduced rectal toxicity when using doses
greater than 80 Gy. In addition, IMRT can potentially escalate the dose to
specific parts of the prostate where there are resistant subpopulations of tumour
clonogens, or can be used to extend the high-dose region to pelvic lymph nodes.
The addition of androgen deprivation to conventional radiotherapy has an impact
on survival and local control. Initial hormone therapy causes cytoreduction of
the prostate cancer allowing for a reduction in radiotherapy volume as well as an
additive effect on cell kill. Long-term adjuvant androgen deprivation has been
shown to improve overall survival in more advanced tumours. Prostate
brachytherapy is now a recognised treatment for those with low-risk disease. It
achieves similar long-term outcome to other treatment modalities. Brachytherapy
can be used as monotherapy for localised disease, or as boost treatment following
conventional EBRT for locally advanced disease. New techniques are available to
improve the precision of both target definition and treatment verification. This
so-called image-guided radiotherapy will help to enhance the accuracy of dose
delivery by correcting both for inter-fraction positional variation and for
intra-fraction movement of the prostate in real-time and will allow for tighter
tumour margins and avoidance of normal tissues, thereby enhancing the safety of
treatment.

Publication Types:
Research Support, Non-U.S. Gov't
Review

PMID: 15808957 [PubMed - indexed for MEDLINE]

Best regards,

RalphV :ralph4: :ile:

[colj_uk]

Hi all,

Update on my treatment.

Casodex 50mg added 12th May prescribed by Roayl Marsden following PSA rise to 3.9. PSA prior to starting RT on June 22nd 1.9 and testosterone 1.0

37 sessions of RT to prostate and surrounding area between June 22nd and August 11th. PSA as of 2nd October 0.1 and testosterone 1.0.

Fingers crossed but if any significant PSA increase is seen my Oncologist at my local hospital advises that she will stop Casodex depending on increase and rate of increase for anything between 4 and 20. Any increase and I think I will seek advise from the Royal Marsden.


Thanks for your help, Colin

[ralphv]

Hi Colin,
It seems your on the right track. Congratulations and best wishes for a great response to treatment.

Cheers,

RalphV :ralph4: :ile:

[JohnC]

The best reaction possible. O Lucky Man

[colj_uk]

Hi all and happy new year,

I picked up an interim PSA test result I had on November 16th via practice nurse, 6 months after starting Casodex and 3 months after completing RT.

PSA 0.4, up from 0.1 6 weeks earlier.

Spoke to Oncol on phone and she advised that it is not necessarily bad news as she does see flutuations with both Casodex and RT and the next PSA result (which I had last week) will be more of an indicator. She would like to see more research on Avodart but I will press her more as it is surely worth ago when I see her this Friday Jan 8th.


Cheers Col

[Esteban]

Hi Col, and a happy new year to you, too.

Regarding Avodart/Proscar: here's a link to an article, "Avodart or Proscar" from the website of one of the premier PCa specialist practices in the world, Prostate Oncology Specialists http://www.prostateoncology.com/resourc ... tion&id=24
or
http://tinyurl.com/yek3gqa

Note the notes :) It's been a few years, and much more can be found on Pub Med, a service of the US National Library of Medicine, at http://www.pubmed.gov

I showed it to my med onc and she (1) switched to Avodart and (2) sent me a nice note of thanks.

It is true that neither Avodart nor Proscar are FDA-approved for tx of PCa, but such "off-label" use is not forbidden.

FWIW, I've been taking 0.5 mg of Avodart for >5 years. Still here.

Best,

Steve (Esteban) Jordan

[JohnC]

DHT can be tested and then the decision made to start/stop Avodart. If full-on ADT resumes then testing for DHT (as well as T) will determine if Avodart addition is necessary. On Lupron my DHT is 1, thus no purpose for Avodart. Others are not so fortunate, and even with low T DHT can sometimes still be elevated.
Colin, you are on the case. Well done.

JohnC (tarhoosier)

[colj_uk]

Thanks Steve and John,

I discussed Avodart (and Proscar) with my Oncol when first diagnosed and she said she did not think DHT could be tested as the labs did not provide this test. I included testosterone to my blood tests last week and if PSA has increased and T is not below 1.0 (it was 1.0 when last tested) I will also discuss changing Zoladex to Triptorelin or Degarelix. Her current plan is to stop Casodex if PSA reaches anyuthing between 4 and 20 depending on the rate of increase.

Thanks Colin

[MacRob]

Hi Col,

I have been hitting the same problem re- DHT testing.
But some hospital labs do the test. Many don't though.

The Churchill in Oxford do, I've just been informed. Yellow top sample tube.

John is correct that T level might be low whilst DHT could remain high. I got Avodart without much hassle. Consultant was happy with my thoughts.

Regards
Rob

[colj_uk]

Hi,

I saw my Oncologist today and not great news as my PSA is up again to 0.9 (was down to 0.1 after adding in Casodex and completing RT). T is 0.7 so not much scope for reducing any further but she is going to discuss Avodart with Prof Tim Oliver (who Steve recomended as a possible 2nd/3rd opinion) and find out where DHT testing can be done.

Intend going back to the Royal Marsden for their opinion on the state of things. Concerns me that my Oncol is not on the ball with new treatments like Abiraterone and MDV3100 and still talks of maybe not making any changes (stopping Casodex) until a PSA of 20 depending on the rate and speed of increase.


Colin

[JohnC]

Is estrogen analogue an option at some point? It is my observation that it is not common here in the US, though available. It costs little so thus is not high on doctor's prescribing list, sadly. Ketoconazole, used early in the game may be useful.
I sense your frustration with the oncologist. This is an anxiety producing relationship for many of us. In fact all of those with any chronic condition. In spite of numerous efforts on my part the "relationship" with my urologist is limited. He prefers to see my back. I sympathize with others in such a situation.

[Manuel]

Hi, Colj. In your first message on this thread your stated:

My Oncologist does not intend to change my treatment until my PSA reaches 15-20, probably 20 has she feels it is better to keep Casodex in reserve and then estrogen and chemo.

Perhaps it's time to go to estrogen patches, Colj. Consult this link at this same forum: viewtopic.php?f=15&t=301&p=691&hilit=premoli#p691

And there are other options left if needed, and more will be showing up in the very near future. Never give up. Best of luck.

[colj_uk]

Hi all,

Update. Had follow up appointment with Prof Dearnaley at the Royal Marseden on the 22nd March (who recommended adding in Casodex and RT to the prostate last year) for which I obtained a PSA test via practice nurse. PSA 1.3 (T = 0.9). Prof advised that this probably means PCa somewhere but impossible to determine where. Recommended no change to treatment at the moment but has arranged no less than 13 different blood tests and repeat CT and bone scans for 3 months time. 95% sure that the scans will still show nothing but if they do he wants to try a couple of hormone treatments he does not think will be available at my local hospital.

Saw my Oncol to day 26th March as part of NHS STAMPDED trial che ck-up for which I had PSA taken on 19th March which came out as 0.8. A variation of 0.5 in just 3 days and at the same hospital. She concludes that the 1.3 result was a blip and my PSA is stable but I had blood tests for B12 and folic acid due to blood cells larger than normaL


Cheers Colin

[JohnC]

Colin:
My first thought, as must have been yours, is that since you have a prostate, your psa will continue measurable, and fluctuate, as do all men who have their prostate, irradiated, TURPed, benign, malignant, or otherwise.
Secondly there is the bounce factor which is just a special category of this fluctuation event.
Then there is the issue of time of day, lab differences, assay variability, and other issues too numerous to count. Can all these accumulate at once to make a difference of 0,5? I think in your case it may well have done so.
That the variability brought the psa to a lower figure is a nice gift to celebrate the coming of Spring after a miserable winter (here, at least).
Cheers!

[ralphv]

Colin,
Agree with JohnC 100%. Enjoy life!

RalphV :ralph4: :ile:

[colj_uk]

Hi folks,

Repeat CT and bone scans at Royal Marsden in June still clear, PSA 1.6 and T 0.37. All other blood tests fine (13 in total) except slightly anemic as usual.

PSA of 1.6 pretty much confirms tha cancer is still lurking somewhere but it is not rising rapidly (March results were 1.3 and 0.8).

PSA tooo low to be considered for other trials so the recomendation is to stop Casodex when PSA exceeds 3 and to start steriods if further increases are seen. Any increase after this I will make another appointment at the RM and consider options at that time.

In the meantime I will carry on in my non-worry mode and get on with life.


Thanks Colin

[ralphv]

Hi Colin,
A PSA increase at castrate level of testosterone while on an antiandrogen is typically an indication to discontinue the antiandrogen(in this case Casodex) or at least switch antiandrogens. Many here switch to Nilutamide. The reason for this is that androgen receptor (AR) mutations can accept Casodex to drive cancer growth.

Another potential therapy is adding a 5-AR inhibitor such as Proscar or Avodart along with discontinuing or switching antiandrogens. Oncologists here use estradiol patches and/or ketoconazole/hydrocortisone to slow down cancer growth as measured by PSA.

In your case Abiraterone might be one way to go. I believe the requirement would be that you prove to be androgen-independent or androgen-resistant. Also check if there are trials with MDV-3100 or even Provenge available to you.

In my very personal opinion I do not see waiting for a PSA of 3 as a favorable guideline to stop Casodex. Stopping it now or switching to another AA makes more sense to me.

Wish you the very best outcome,

RalphV :ralph4: :ile:

[JohnC]

I, too think a 5-AR MAY be relevant, if the DHT can be measured and considered. My DHT was very low while on therapy and with Avodart. I stopped the avodart and DHT stayed low so it was not the avodart but the low residual T that limited the DHT in may case. One less pill each day and fewer trips to the druggist and a cost savings as well.
If DHT is measured and seems an issue, then dutasteride is the option.
Keto has been reported to be more effective with psa under 10 than with higher levels.