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Tommy

Hello everybody. I'm new to this forum. Thank you for allowing me to be part of it. I've been HIV positive for 26 years and recently diagnosed with prostrate cancer Stage pT3bN1 with a Gleason 4+5 after rising PSA 5.8. I am 60. I underwent a Laparoscopic Radical Prostatectomy + nodes (Robotic). Post operative PSA 1.4. Unfortunately microscopic cancer cells still remain. Now considering treatment. Last two PSA 1.5 stable. Underwent whole body bone scan. No evidence to suggest metastatic bone disease. Further CT scan of chest, abdomen and pelvis suggests no evidence of malignancy. Good. My problem is to decide on treatment. As I already have a weakened immune system I want to protect it as much as possible. Oncologists don't seem to understand the relationship between HIV and cancer. Not much is known about it. I have been recommended to start ADT. Lucrin (injection once a month) with Cosudex (one tablet daily). After some research, I want to try Enzalutimide together with SABR Radiotherapy and possibly Medical Cannabis. I would be interested in your opinion with this option. My biggest concern with regard to treating this cancer is the differing information I am barraged with. It's very difficult to make an informed decision. Let's do this, add this, see what happens, that hasn't been scientifically proven, you don't qualify for a trial, natural therapies don't work. I need a Medical Oncologist that is prepared to think outside the box, open to suggestions and provides options whether traditional or unconventional. Living in a small coastal village in Northern NSW makes it hard to find a good Oncologist without travelling great distances. Thank you for reading. 

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Johnno

Hi Tommy, the option your are thinking about might not be available to you right now. The stereotactic radiation I believe needs a visible tumour to target unlike the salvage radiation where they ablate a general area around the prostate bed hoping to hit something. With the enzalutimide or aberaterone option you may need to check this but I think you have to have progressed from traditional treatment such as chemotherapy or at least "failed" first line ADT to be eligible for this type of drug. As far as medical cannabis goes - good luck finding a doctor to prescribe it because there are very limited criteria for physicians to be able to prescribe it and I'm pretty sure pain relief from the cancer is one. Anyway the plant grows like a weed in your neck of the woods so do your research and get the good stuff direct from the grower. One last thing I thought I would mention is lymphedema. Because you had nodes removed you are at are real risk of developing lymphedema so just be aware of tell tale signs like soreness in your legs a bit like shin soreness and any unusual swelling in your legs as this could be a warning sign. Hopefully this won't happen but if it does get onto it straight away. 

Good luck with which ever way you go I'm sorry I can't be more helpful,I would suggest you make an appointment with a  radiation oncologist - I was treated at the Princess Alexandra Hospital in Brisbane and I can recommend it as a place to start your enquiries.

Cheers

John

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DarrylB

Hi Tommy

There is something wrong with this picture.... you made the comment that " Unfortunately microscopic cancer cells still remain "

My question is, how do you know that if scans don't show it up?? at 1.5 it would light up like a beacon!!

Ron Piana, the guy who invented the PSA test says it is very flawed and can't be relied upon for cancer diagnosis... I know a bloke that underwent a radical prostatectomy using the robot and ended up with a PSA of 22 some 6 months later!!! AND all the scans showed nothing, after about 12 months his PSA went down to almost zero  (<.01)... go figure.

Something to know about the test is that it is a "sandwich" test and involves using animal protein doped up with all sorts of things to change colour when PSA is detected in the sample..BUT an allergy to the animal protein can also send the colour off without any PSA!!

 

You seem to have a compromised immune system due to HIV and that may have influence the test. You may have heterophilic antibodies interfering with the test...  check this out  http://scantibodies.com/PDF/FP_Blocking.pdf

I noticed you said your PSA was stable... I wouldn't panic yet and for what it's worth only work with Drs who practise evidence based medicine, in other words don't let them blindly treat a condition that may not exist..

all the best

Darryl

 

 

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alanbarlee

G'day Tommy,

Welcome to the Brotherhood!

First, be aware that the PCFA website has some excellent information resources that address specific issues like HIV - as do some top tier websites like Medscape (which you can register for).

Micrometastatic systemic disease does need investigating and early treatment, especially when accompanied by GS 9. You might note that the standard 99-technetium bone scans aren't very sensitive in the early stages of PCa, and neither is a standard CT scan. Bone scans typically need the PCa to have progressed to a PSA of 20 or more, while CT scans aim at detecting unusual masses or lesions, and lymph nodes that are getting unusually big - not always seen in the early stages.

These days, PT/CT scans are more sensitive, since they pick up unusual metabolic activity as well as accurately locating the suspects. The most sensitive seems to be 68-gallium-PSMA, followed by 11C-choline (not easily accessed) and 18-FDG, which found my metastatic lymph nodes back in 2005.

I agree with John's comments about stereotactic radiation - this technique needs visible targets. However, as John suggests, it would be worth exploring with a radio-oncologist the role of adjuvant (i.e. following RP) intensity modulated radiotherapy (IMRT), since localised / regional cancer may be able to be mopped up that way.

The general principle these days in dealing with high risk cancer seems to have evolved away from an 'optimum sequence' to 'optimum and timely combination and multi-modal therapy'. The standard of care that high risk, metastatic, hormone sensitive PCa treatment seems to be evolving to is androgen deprivation therapy or ADT ( e.g.  a GHRH agonist like Lucrin, which you mentioned,  plus an anti-androgen like the Cosudex that you also mentioned ), but now in conjunction with chemotherapy, viz 6 rounds of Taxotere / docetaxel. The benefits of this approach seem clear from the trials, but individuals with other medical issues - like yourself - should definitely be guided by an experienced oncologist (maybe more than one), to ensure that the risks / benefits of your treatment options are appropriate and that the monitoring regime is tight. Your own attitude to risk and consideration of possible benefits to you should also be part of the conversation.

The 'second generation' ADT options (Zytiga / abiraterone or Xtandi / enzalutamide) can be very effective, but PBS access involves some rules, viz 'after chemo fails to be effective' or 'if its side effects are (or are likely to be) intolerable'. The early use of chemo with ADT - if and when unsuccessful - may accelerate your eligibility for one of these.

Stay in touch - and good luck!

Alan B 

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