Pathology report in - should we commend with HT?

There have been considerable developments since I last posted. I urged my family to go to Shanghai to see the surgeon who performed the original operation who was not convinced by the MRI result we obtained locally (being told of a 5cm tumour that had invaded the bladder). Of course, being distraught, it was a hard decision to make because we feared going to Shanghai would waste time - and of course the local hospital wanted to go straight to RT.

But in my opinion the original surgeon should be the one to review the patient. In Shanghai they presented the MRI information and the doctors there said they could not see the tumour in question. They then performed a second MRI, and still couldn't see anything. They then did a bone scan and found no metastasis, and then finally a PSMA CT scan which sadly couldn't identify the cancer's location for RT.

In my opinion the chances of the local hospital lying about the MRI result is high. That might sound absurd, but in China this sort of thing happens all too often and I have heard personal accounts from people who have received similarly profound diagnoses in an attempt to procure the patient for costly procedures. 

Either way, I'm very grateful for your help and Old Salt suggesting the second opinion.

At this stage the Shanghai doctors have suggested that we follow the guidelines and perform RT before the PSA reaches 0.5. There is some conflict of opinion as we have heard some suggesting it's better to wait for the PSA to rise and then perform new scans in an attempt to pinpoint the location of the cancer growth. But the Shanghai doctor thinks it's time to start with a full pelvic radiation therapy as he doesn't believe - based on the tests - that the cancer has left the region.

We're only worried that full pelvic RT isn't as effective as pinpointing the location, but also we're up against the clock. We now have the option to stay in Shaghai to perform the RT, or to return back to the home city and do it there. OR, we can ignore the doctor's advice and wait for a PSA rise and attempt a new scan at a later date.

Does anyone have any feedback regarding this? What are the pros and cons of peforming a full pelvic RT versus a pinpoint location?

Thanks all once again!

Thank you for your responses!

To clarify, we have definitely been able to breathe easier and slow down since the second opinion and further tests. The only quandary is data relating to when it is appropriate to perform RT and whether or not one should wait a period of time to allow the cancer to become identifiable by the machine. 

Of course I completely agree with you: being able to see the location and target it specifically is ideal. The problem is, post PSMA CT result, and failure to locate in this instance, the doctor has already suggested doing full pelvic RT.

The official guidelines suggest RT should be performed under 0.5 ng/ml, but we have spoken to someone personally whose PSA is at 4.6 and the imaging studies still couldn't reveal anything.

In another instance (in this case an online account) imaging studies couldn't identify a location for RT when BCR in the patient and his PSA reached 10. Suddenly the cancer metastasised thereafter.

It's a confusing thing. On one hand you wish to be as accurate as possible, but to do so you need to allow a disease to grow to dangerous levels. We understand both why people here have suggested allowing the PSA to rise and then doing further imaging tests, but also why the doctor - who believes post testing that the cancer has not left the pelvic area - thinks RT of the entire pelvic area is necessary.

I only worry particularly about the efficacy of full pelvic RT and the potential side effects. On that note I should probably ask, side effects aside, is there any difference in efficacy when pinpointing a select location or doing a full pelvic coverage? Or would the outcome be approximately the same?

Old Salt: Yes, the Shanghai people are certainly more reliable than the ones available locally. They do at the very least, tell you the truth. And I appreciate your reply here, and we will endeavour to explain this to the patient. He does have very little understanding of the issue and we tend to do all the decision making, but he certainly will understand the possible side effects if explained. 

Hopefully he will have some idea about what he wants to do, we're just all working hard to figure out the best thing to do.

Once again, thank you all for your continued input. It's been invaluable to have an English speaking resource to turn to for advice.

Hello all, I just wanted to update the thread on our progress and decisions and also run a question by you. 

After full testing in Shanghai including MRI, Advanced MRI, Bone Scan and PSMA PET CT, it was concluded that the cancer is contained within the pelvic region. They couldn't find any evidence of metastases, but unfortunately, the PSMA PET CT also could not locate the precise region of the cancer.

The doctor suggested that rather than wait for the PSA to rise further (now at 0.251) and do additional scans, that we instead perform RT on the whole pelvic region. We are now in Shanghai preparing to start the procedure. 

The question I wanted to ask is the following:

The course in Shanghai is IGRT at 70g, 35 times. Includes the prostate, fossa and lymphatic drainage area. The NCCN guidelines recommends combining RT with 6 months of ADT for 'high risk' patients. However, our doctor suggested just doing the RT first and then maybe ADT later. I just want to know your opinions about RT and ADT combination and timings, and is it safe to do ADT sometime after the RT course has finished?

Thank you for your continued input!

VascodaGama said:

Contained within the pelvic region ....

I agree that you can advance with a salvage therapy since far metastases have not been detected in the exams you describe above. The proposed protocol is typical (70Gy in 35 sections). Adding ADT is an option that, according to clinical trials, did show 35% of improvement (longer periods of free biochemical failure) when comparing the combination therapy against solo RT. However, RT is the the therapy that kills the cancer. Nothing is lost by doing it alone. The outcome is checked with a series of PSA tests which results could not be trusted if the PSA was masked by ADT. Your father also avoids the ADT side effects and he can always continue with a sequential ADT in future if SRT fails to eradicate the bandit.

Best

Thank you VascodaGama for your response. That helps us with regard to how we will approach ADT combination therapy.

We also wanted to query something regarding RT. Some sources informed us directly that RT is a fairly standardised procedure. There shouldn' t be a lot of variation between hospitals. That said we still elected to travel to Shanghai to have the treatment done, rather than in the smaller home town. The Shanghai hospital however, doesn't specialise in tumour treatment, they just have the equipment to perform a course of RT. The main reason was that the surgeon who performed the RP is in the same hospital, and said he would confer with the RT doctor regarding the course. 

We're a little down about the RT doctor, because he seems rather impatient (it happens in China). We are aware that in Beijing they have a more advanced set of equipment for performing RT whereby they apply a higher dose over a shorter time period, but we chose not to go to Beijing because of expense, the difficulty of living arrangements and being unfamiliar with the hospital.

Did we make a mistake? The first dose of RT has been applied now in Shanghai and we're not sure whether it's possible to stop after the first does has been given and change hospital (we're told that that's not possible by the doctors). What we want to know is, is it true there isn't much room to get RT wrong? And that between hospitals we shouldn't expect a big variance of outcome.

Of course we're looking for the best possible care, we just felt Shanghai was suitable, but now we're a little wary of the RT doctor and keep thinking about Beijing's superior equipment.

Thank you for your advice and information!

Ok, thank you for that. We will discuss. He has had two doses administered so far and is scheduled to have breaks on weekends.

@Grinder, yes that was a typo, I was asking if the ADT weakens the cancer cells and makes the RT more effective in the process.

Thank you for your detailed response. I was aware of how ADT works, but I hadn't had anyone clarify as to why combination of treatments is part of the guidelines. 

@contento, that's extremely helpful and the clarification I was looking for regarding how combined therapy works. We have decided to combine ADT with the RT treatment immediately. This morning the radiologist who performed the 12th treatment of the course actually said he should be on ADT and was (kind of) surirpsied the urology doctor hadn't prescribed this already.

Because we only have one shot at the pelvic region, and at the moment we have no choice but to assume that the cancer is confined to that region, in my opinion we should be hitting it as hard as possible. Therefore we have elected to start ADT immediately as of today.

I feel very frustrated about all this. There's nothing wrong with the Shanghai operation per se, but there is a problem in China it seems when it comes to having concrete ideas about something. In some ways it feels as though the information we bring is affecting the doctors thinking, when it should really be the other way around and he should be educating us. 

It bothers me that we have already had 12 treatments before starting ADT now, as that's 12 opportunities lost in a way, to have the RT work more effectively. Anyway, we can only hope that the recent PSA result isn't anything to do with distant metastases and our decision this morning isn't too late. 

Now we will just see the course out and decide how long to keep the ADT treatment running post RT. I will update when there is some more information.

Thank you all for your responses, I can't tell you how important this forum is to us, especially as I'm dealing with this in a foreign country where I don't speak the language very well.