Hi fellow warriors, I've just had a phone appointment with my Oncologist my PSA is 0.7 and started to go up but not high enough to warrant having a Scan at the moment.My problem is she doesn't think she will be able to put me forward for a Pet scan as I have already had a couple in the past and with so many on the wait list they are only allowed so many a month as well. But I could have a CT scan.
Ive been on Zoladex for about 5yrs now, a previous Pet scan found a spot on my Spine which I was then able to have radiotherapy to remove, my question is
In another 3 months time when my PSA is above 2.0 should I just go ahead and have the CT scan or should I pay myself to have a full Pet Scan.
Will the results be that different between the two scans? to warrant paying for the Pet scan.
I guess if they find cancer that's not on my bones then radiotherapy maybe out of the question.
Any thoughts / suggestions greatly appreciate.
Cheers
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Chubby42
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There is no proven benefit to irradiating spots seen on PET scans, but it may be beneficial, no one knows yet. If it is safe and you can afford it, why not?
Thanks for the reply m8, a Pet scan showed a Met on my L2 3yrs ago, then with high dose Radiotherapy it killed it off & kept my PSA down at 0.1 for the last 3yrs so I guess it helped then.What I'm worried about is a CT scan missing something and instead of killing it off again with more radiotherapy they will just change my medication to something stronger like Xtandi when I can last longer on the Zoladex if that makes any sense and move to Xtandi later on.
PSA isn't your cancer - it is just a chemical secreted into your blood by the largest tumors- Getting rid of those tumors, gets rid of the PSA they produce. But that doesn't mean the progression of your cancer has been slowed. This may help you understand why treating PSA is not enough:
I would be wary of relying on PSA alone to decide on treatment. Mine continues to fall (now at 0.07) but the mets have not shrunk. I think 6 monthly CT scans would be wise.
I have extensive mets but only irradiate those that give me any discomfort.
Hi m8 thanks for the reply, I'm trying to stay on my current Hormone therapy as long as possible before going to the big hitters like Xtandi or Zytiga hoping to manage my Mets as long as possible with radiotherapy if I'm able to.Cheers
So it's not possible to manage my cancer by just staying on 1st line Hormone therapy and radiotherapy until it progresses further than just bone Mets. If that's the case why aren't the Oncologist here saying otherwise or move onto the big hitters earlier?Cheers and Many thanks.
I have no idea why your oncologists are misinforming you. I can only report what the data clearly prove. Those "heavy hitters" as you call them, used early enough, have been proven to extend survival over ADT alone.
Hi chubby, I have asked for the big hitters as you call them but the expense is out of the question, that is in Australia anyway, But every country has different guidelines.
Hi Aries29, so Xtandi or Zytiga aren't included in Medicare in Australia do you have to pay for them.Most treatments are covered on the NHS here in the UK, but since the pandemic, doctor and nurse shortages now strikes over pay disputes treatment over here has fallen way behind for things like scans.
If I qualify for Lutetium-177 treatment down the road I may return to Perth where I'm from for treatment as its cheaper there than most other countries.
I had two LU-177 treatments in Sydney at $10K each which reduced the PSA to 1.6 but then they told me to go & have ADT again. Two years later PSA was back to 19 so it was not the magic bullet as most people seem to think.
I asked for Xtandi here but it was not covered by medicare & everything has changed here also after the unnecessary shutdowns from the pandemic.
Yep the NHS here is in a bit of a mess m8, lack of doctors & nurses, hospital staff including radiographers all have been on strike at some point this year over pay & conditions. The place where they do the Pet scans is the only one in the area and is private so the NHS use them but are only allowed to book about 4 or 5 a month my Oncologist said, I think last time they may have even used fund raising money to help pay for my Pet scan. See what my OC says next time, if I can get away with just a CT scan then great if she thinks the Pet scan will be that much better then I'll pay for it.
In the US you could get a Choline scan, a Axumin scan, a couple different PSMA scans, or a FDG scan.So most hospitals have recently in the US moved to what is called Pylarify PSMA scan when that became FDA approved for Prostate Cancer. This has now become available in most hospitals.
Yep as I mentioned the NHS here in the UK is in a bit of a mess, most people don't have private health cover.But I have put a bit away to pay for things like a scan and the Lutetium-177 treatment if I qualify.
So I'll have to go down that route if I'm refused another Pet scan.
Dont know if you are standard CT Bone Scan, but if so here is a good article showing the benefits of traditional CT Bone Scans...seems that they do serve some function...
But PSMA PET is the SOC now so I would push to get them as often as you need them. Check out this podcast where a patient insisted on back to back PSMA PET, refusing sRT (salvage), finally finding where his tumor was growing and provided accurate treatment...
Min 16:54; 3D PSMA PET testing – debate that PSMA PET should be denied once a patient refuses sRT…bull is what I say! Get scans early and as often as you think you need to find MET when it starts, not when its established in multiple locations (see Min 31:42 for a counter discussion)…cost should not be an issue.
Its your cancer, its your policy paying for the treatment, its your decision...make the best you can and push where you think you need additional testing...my heavens do they resist additional testing! Your Doctor's may be in a hurry...you have to take some time (not infinate) to make the best decisions...based on good testing! Rick
PS if you have time plow thru the 3 case histories...really good way to learn a lot about this disease...I like this format. The Doctors are given case history as it develops, not knowing how the patient progresses. Then their decisions are compared against outcomes! IMAGINE if all our doctor's decisions were likewise based on actual outcomes...we can dream. Rick
SOC, which most doctors try to follow, is based on outcomes, as shown in studies of hundreds of patient outcomes. SOC is not fully established for all patient situations.
OK, let me clarify...not one Doctor that I have had in my PCa treatment history, not a single Hospital or clinic, has ever called me, given me a survey or come back to see whether I am dead or alive, what state of recovery I have and whether I am satisfied with their services...now, I may be unique and if so I am off the mark here, but I suspect I am not.
When I 'interviewed' my surgeon and radiologists at the start of this adventure I asked those stupid questions we were all asked to jot down and regurgitate, their success rates, recovery percentages, yada, yada, yada...now after years of having absolutely no contact with any of them how did they know how to answer my questions? I surmise they were flat making it up!
Sorry, from my personal experience I dont see that 'outcome based medicine' exist in the USA. You get marketing pre-treatment that is based on nothing. If its based on "studies," then its not based on outcomes! That is my point. Thanks. Rick
when I talk about outcomes. .....I mean those outcomes that resulted from a cerrtain SOC treatment.....in other words, of 500 patients with this typr of diagnosis, and treated with X SOC treatment, the PCa mortality was Y after 5-10 years. Just an example.
What do YOU mean by outcome-based treatment? Perhaps SOC treatments for men who have BCR recurrence...as an example?
I do mostly agree with your 1st 2 paragraphs!!! They evidently assume everything is AOK unless they hear otherwise from the patient? and many complain about paperwork/computer time taking away from patient face/voice time........one Doc I know retired because of that paperwork requirement!!
It is a business.....i don't know what we can do to alter that fact?
Not sure about others experiences above in the states but mine seems different and very SOC. My progress is monitored and recorded at each Dr visit. On first recurrence I was required by insurance to get CT and bone scan first. Both came back clean. I finally got Pylarify PET which I had pushed for up front and it found some small mets in spine which my RO later determined were spine and LNs. They were going to radiate and later decided against. I am now back on Lupron and Zytiga. Tried Lupron and Xtandi and hated it. PSA back down to .04 and feel good. They only odd thing is that no SUV were recorded on my PET or if they were, try as I could and I asked both oncologists, nobody could tell me what they were. Most results posted here show them so juries out on what this is about.
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