PSA rising slowly - PSMA scan?

[DesG]

 

I am 4yrs since radical surgery.

My PSA has started to register albeit low .07 - specialist waiting to see doubling time.

Return visit 7th Dec.

He suggested it could be metastatic or in the clearance area of surgery in the prostate. Whereby radiation would cure it.

In December would a PSMA scan be appropriate to define where it is? Or even have one done in the meantime.

We phoned the specialist and he said not at this point.

Just wondering what others thought. Thanks

[Admin]

Des

Your specialist will only order scans of any kind if it will alter your treatment.

The urgency for change of treatment will come from your doubling time.

If the doubling time is too short, your doctor will probably order scans to sort out where the cancer is, and then target that area, if possible.

 

Jim

[alanbarlee]

G'day Des,

I'm inclined to agree with your oncologist - 4 years out from an RP, a possible re-emergence of PSA as low as 0.07, in the absence of serial increases and a short doubling time, doesn't suggest ( to me - an amateur) urgent or expensive scanning just yet.

 

Irradiating the prostate bed is a proven option that may stop any local PCa in its tracks - depending on the pathology at the time of your RP, and on the version of your cancer. What was the Gleason score, the number and percentage of positive cores, and the surgical margins status at RP?

 

Best wishes,

Alan 

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[Guihan]

Hi Des.

It seems that no two cases are ever identical, but yours seems similar to mine – at least for now.

After my radical prostatectomy in 2003, my PSA remained quiet for a while, then started to inch higher after 3 years. At just under 4 years, it reached 0.7, at which point my urologist started me on Zoladex implants. My PSA then dived for a while, before rising again (a bit more aggressively this time).

As time went by, the cycle of rising PSA and Zoladex implant was repeated. During this period, I was able to capture enough information to enable me to calculate both my cancer doubling time and my Zoladex halving time.

From the resulting graphs, I was able to adjust the periodicity of my implants so that I commenced each cycle at a slightly lower PSA level each time. For me, this worked out rather neatly at one (nominally 3-month) Zoladex implant every six months. As the PSA kept getting lower, it was not long before the PSA never climbed to a sufficient level to be recorded.

I have now been on Zoladex implants for nine years without side effects. Importantly, my PSA has not been high enough to be recorded for over five years. I am not a doctor, but every instinct in my body tells me that I am better off with a PSA that is too low to record than one that is up there at some level more convenient for a specialist to work with.

Des, I repeat that this is my story, and yours may be entirely different. Whatever lies ahead, I simply urge you to keep fully involved in your treatment options. Good luck!

[Don Bradfield]

The sensitivity of PSMA scans appears to suggest that it is difficult for them to pick up very small lesions and I understand that possibly they are not indicated until psa has got to at least 0.2  as the test may be unable to detect a   lesion until it has become large enough to ( but it is still finding lesions of about 4 mm? smaller)  . ( putting it another way,doing  the ( expensive)  test too early may falsely reassure you that there is nothing wrong  and if you wait until the psa is higher you would have a much better chance of the test  actually finding a treatable lesion.

[Popeye]

Des: Following on with the thread of this conversation and the original subject I would like to offer my input for you. You can follow my story with advanced PCA through my posts on this site but basically I have had radiation treatment and salvage surgery for my PCA, I stopped ADT treatment back in March 2014 when my PSA was stable at 0.008 and remained there until July 2015. Since then it has been increasing with a doubling rate of approx. 4 months. My latest visit to my urologist two weeks ago resulted in my PSA level at 0.11 and we discussed the use of a PSMA scan. His argument to me was that we should wait another 6 months and then have the scan when he expects the PSA to have doubled plus a bit more which would almost guarantee the scan would be able to detect where the metastasis may be located. With this information we could then have a much clearer idea on the next line of treatment. It may be possible that the area or areas revealed may be able to be treated with stereotactic radiotherapy as opposed to ADT even though I have had extensive radiation therapy in the past. I must say that I am not looking forward to re-starting ADT if I can avoid it. My point here is that it seems that PSMA scans are a leap forward in imaging by being able to detect much smaller lesions than previous scan techniques, however it appears that a PSA of approx. 0.2 is the accepted level by medical specialists where these lesions can be detected by a PSMA Pet scan.

[DarrylB]

Hi Des

I read your article on Friday and have been pondering it over the weekend.

I really feel for you... You like many of us have invested a lot of time, money and mental energy into a possible cure by surgery. The sacrifice you and we (members) have made in the devastating treatment and it appears to have failed. Reading your story brings back all the ill feelings I and I imagine we all have had and now, you wonder where to from here.

My cancer returned at 8 months and slowly rose till about 4 yrs when it was declared recurrent. (I have just passed 6 yrs post surgery)

You didn't say what sort of Specialist is helping you deal with the rising PSA?  I belive an oncologist to be the best person after the surgeon has failed.

If your Urologist is like mine you will get no help at all and that leaves you to deal with your issue without any professional guidance.

I have seen 4 Urologists and finally an oncologist regarding my case and only one of them was honest enough to give me the sobering truth about my PCa.

His answer was that radiation only works for about 7 yrs and either the original PCa will return with a passion or another mutation caused by the radiation will take over. He offered his radiation colleagues name and number to confirm the same. The last Urologist I saw stated his radiologist was giving 100 greys of radiation to try and kill the cancer!! That is 35 greys above the maximum you should have!! Can you imagine how bad the surrounding tissue damage is?? I have never heard of chemo for PCa working yet and I have read a lot about PCa treatments.

I am not convinced any of the "Pharma" solutions at this stage offer a cure or halting the PCa progression without severe side effects. I am currently taking a number of concoctions and appear to have slowed my PCa's progression from doubling every 10 months to a rise of .01 in 14 months. My GP is amased and only 2 weeks ago asked all sorts of questions about my "home grown" solution. If you wish to know what I am doing, email me at gippselec@gmail.com.

I am waiting for immunotherapy to happen and I believe it is not far away... may be 3 yrs?

 

Des, .07 is still low at this stage. In Australia, (.1) is considered recurrence, yet in almost all other countries (.2) is regarded as recurrence. A factor to consider is the PSA test itself.  Inherently it seems to very inaccurate, in some cases the prostate gland was riddled with PCa and the PSA result was low and in other cases the inverse was true.

My advice don't rush in, research all you can and if you decide on any treatments ask for evidence on how that will help you... remeber you are only an income source to the medical profession and nothing more. You have to remind them that you are the client and they are your contractor.

 

Keen to know what you decide.

 

DarrylB

 

 

 

 

[DesG]

An update on my situation. Saw the Urologist today - my PSA is now 0.22,

(previous readings 28/7/16 - 0 .06,  03/08/2016  - 0..07: 24/11/16  - 0.22 - too low apparently for a PSMA scan. He is going to have a discussion with his multi disciplinary team to see what approach to take, we are to follow up with him on the 20th. In the meantime I have an appointment with one of his team, oncologist  Prof Gurney on the 13th. Urologist said to still go and see him, so still playing the waiting game. Will ask the question about the most aggressive approach, father had PC, I also have 2 auto immune diseases which, from what I heard in an ABC interview will negate the option for immunotherapy down the track.

[Greg Bilson]

Hi Des

I had PSMA test I may this year. With PSA at .67. The scan showed very little with the possibility of a small lesion in a lymph node in the right pelvis area.

Since then PSA has risen to 1.3 and specialist has started me on Eligard. Was on Zoladex back in 2013. Since starting on Eligard am having difficulty sleeping but GP thinks this is not a side effect.

[DesG]

1 hour ago, Greg Bilson said:

 

Greg, interesting that the GP said that insomnia was not a side effect. I just googled (not that I take google 100%) Eligard and is says one of the side effects is insomnia. I thought I would check it out in case I had to go on it.

[DesG]

Update on my situation. PSA now 0.41. Had PSMA scan on 6th Feb

Findings:

5mm right common iliac. (SUV5.1)

5mm right pre-sacral node (SUV4.1)

2 equivocal 3mm nodes adjacent and lateral to the right ureter in the right internal lymph node region (SUV4.3)

No evidence of distant metastases.

Rang oncologist - his secretary advised that he has passed back to urologist. Rang Urogolist who said he will consult with the team of specialists to consider what action to take. See Urologist 7th March. Talk about them making you wait! Very frustrating! As the Oncologist has referred me back to Urologist guessing at what treatment they will suggest. Radiation? Surgery?

[alanbarlee]

G'day Des,

It's good that your uro consults a multidisciplinary team before launching out on treatment.

With the nodal mets, you might want to consider switching your primary specialist to a medical oncologist in the same practice.

The options for treatment are unlikely to include surgery. Stereotactic (high dose / precisely targeted) radiation could be an option, since you have less than 5 mets, but this is one for discussion with radio-oncologist. Cost may be an issue, since this treatment is not yet subsidised outside of clinical trials.

More likely is systemic therapy - which means adding Zytiga or Xtandi to your ADT - prechemo if your oncologist assesses you as likely to be intolerant of chemo, or otherwise, chemo (Taxotere), with the option of adding the agents afterwards if the chemo doesn't work, or if you can't tolerate the side effects.

Not every treatment works for every man, and not all men suffer heavy side effects from these drugs. That's why having the current range of options is so good for men in the current era.

A good relationship with a medical oncologist (or possibly with a well-connected and personable urologist with a particular interest in prostate cancer) will help to sort out the above options.

Good luck as you navigate your way through this - and stay in touch!  

 

[DesG]

Anti-climax, saw urologist today - he hadn't had the discussion with Multi Disciplinary team as yet! this will happen on Friday - have to call him on Tuesday - he is thinking that Radiation wont be an option because of where the mets are -" at the back" - his terminology - the exact position is as per my post on the 20th Feb. I assumed that he would discuss the stereotactic option with the team but thought I should confirm this. I asked the receptionist would she have him include this in the discussion on Friday. He is thinking hormone treatment which he says he can initiate. I have' made an appointment with the Medical Oncologist, this urologist is a bit too distracted and blustery for my liking. Can't see that there are any Clinical Trials that would suit my situation.

[DesG]

Finally have an indication of what the treatment plan is. Have been referred to a radiation oncologist. Hopefully it will be stereotactic. Information was given over phone so caught me off guard and I didn't confirm. I have an appointment on Tuesday with the Medical Oncologist who I decided to see on the advice of local support group. I want the most aggressive treatment as I believe that Immunotherapy if warranted down the track will not be suitable for me as I have 2 existing autoimmune diseases. Is anyone aware of this?

[Admin]

Des

The only immunotherapy which works for regular prostate cancer is Provenge (Sipuleucel-T).

The only place in the world you can get it is the USA.

Price is $103,000 USD.

Provenge official site lists no contraindications to its use.

 

We are hoping that the results of the a clinical trial of another immunotherapy agent, Prostvac, will be available within the next years. Then maybe we will have a second immunotherapy.

 

(Fake immunotherapy treatments are available in some overseas countries.)

Cheers

Jim

[DesG]

Thanks for that Jim, it's just that I saw an interview on ABC where the specialist was talking about immunotherapy and the astute interviewer asked whether the therapy would work on those with pre existing auto immune diseases. the specialist indicated that it wouldn't. So I suppose it's a wait and see what is developed and whether I would be eligible.

[DesG]

Updating my situation.

Lymph nodes were identified after PSMA and had 33 radiation treatments. Hormone Treatment commenced at the same time - Zoladex for 6 months which commenced in April and has now finished.

PSA now 0.01and Testosterone 0.1

Saw Radiation Oncologist today who said that PSA was not detectable, even though 0.01. I suppose she knows what she is talking about!

Her advice is to cease Hormone Therapy with follow up PSA in February.

I would like to be aggressive in treatment. (My father died from the disease). Having read and watched Dr. Alicia Morgans presentation on using Docetaxel followed by treatment with Abiraterone was wanting input as to whether you guys agreed that I should push for this. I have an appointment with an Oncologist next week.