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Pathology report in - should we commend with HT?

Pathfinder
Posts: 55
Joined: Jun 2016

 

*THREAD TITLE ADJUSTED 16/8 - Surgery was performed on this day, and related questions are further down the thread.

****************************

Hi all,

New to the board and desperate for your knowledge. 

My Father in law has been diagnosed with PC, result of the biopsy is Gleason 8 and his PSA is 24. Based on his medical records the PSA appears to be doubling yearly (don't ask why this wasn't addressed earlier, it's not a nice story!).

His bone scans and MRI came back negative for mestastatis, and he has no symptoms.

From all of my research it seems to me like surgery ASAP is the best option. We're all extremely worried about the cancer being aggressive based on the numbers and don't want to give it time to breach the prostate.

However the doctor has reccommend three months of hormone treatment first, including a monthly injection and pills to diminish testosterone. I understand that the reccommendation is based on making the surgery safer, however as the PSA is doubling yearly at a rate of almost 1 a month, that seems like a long time to wait.

And here's the serious part: He's in China. Chinese hospitals are fairly dark. If they can make an extra 10,000 in treatments prior to the surgery, they probably will regardless of his biopsy results. This is the main reason why we're seeking a second (or third) opinion (this week), but I'm fairly wary of the reliability of the system here from experiences passed down by other people.

I hope you can help. If I sound frantic, I am! I feel as though this is a race against time and I'm not comfortable with his biopsy numbers at all. If someone can give me any advice regarding how 3 months of hormone therapy would benefit the surgery, how it works exactly (does it actually stop cancer cell growth, or reduce its size making it easier to catch-all with prostate extraction?) I would appreciate any information you have.

Thank you so much for taking the time to read this.

 

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I wonder if the details you posted above is the total information provided in the pathologist's report. Do you have a copy?

My opinion is that the neural invasion finding is the worse in the report. Cancer spreads out via this route which could lead his surgeon to think that there are extra capsular extensions, therefore recommending  continued HT. Gleason score 8 (4+4) has been confirmed. This is an aggressive type of cancerous cells, but they indicate it to be positive to AR (+++), PSA (+) and PSMA (+), which makes them prune to an attack with hormonal weaponry, and control via PSA tests. Surely these missiles wouldn't kill the bandit but it would knock it down to the canvas. The indication on the PSMA (+) also provides possibilities for "guided" radiation missiles with a PSMA isotope (newer techniques in the fight against PCa).

Your comment on "...no break through..." may refer to negative margins. This is a particular in RP pathology when the outer skin of the gland retreats due to cutting. There is no information on the Lymph nodes which is strange because they dissected some, as indicated in your previous post. This LN data is very important and you should check with your family in China to inquire on the results.

For the moment your father in law needs to recover. When recurrence becomes apparent then he can pursue a salvage therapy with intent at cure, instead of a palliative treatment. That can be done once he ends the period on HT and gets a clean PSA result.

Best wishes for complete recovery.

VG

 

Pathfinder
Posts: 55
Joined: Jun 2016

Hi VGama!

Apologies, forgot LN! Lymph nodes no infection, all clean. Seminal vesicles no infection. 

They specified the overall result as being good. They said that the cancer was contained within the gland. The way they described it was that it reached the outer layer (as if talking about the skin of an orange) but did not break through. Considering this, we're very confused about neural invasion. How serious is this and how should we approach treating it? Is it more or less serious than infection of the seminal vesicles etc?

Since they stated there was no break through and no extra capsular extensions, how is it the neural invasion can still occur?

Regarding HT, the doctor didn't actually recommend it. We brought the matter to him first. He told us that HT post surgery is controversial and the NCCN don't recommend it post RP, however it was our choice. After some discussion he said due to the Gleason 8 and that he was on HT prior to surgery, it is ok to continue. But before we raised this I'm not sure they were going to suggest HT at all. So there's some confusion here.

Thank you for all of your help. 

Old Salt
Posts: 732
Joined: Aug 2014

I speculate that the Chinese doctor who recommended HT initially (prior to the surgery) did so on the basis of the high PSA (24). He may have thought that such a high level could mean that cancer had escaped the prostate. Now that we have seen the pathology report, this hypothesis appears reasonable. Cancer cells may (!) have escaped, especially since neuronal invasion was present.

I see three approaches.

1. No HT and wait until the PSA starts to rise (there are thresholds for taking action).

2. Starting HT (after recovery from the surgery) right away, with the intent of killing (currently tiny) metastases. As mentioned, the latter could have been the source of the high PSA (24).

3. Irradiating the surrounding tissue to kill any cancer cells that might have settled there (after recovery from the surgery); perhaps in combination with HT

 

No an easy decision to make, but perhaps other forum members will present their recommendation(s).

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I agree with Old Salt's opinion. I think his doctor is not totally confident that the cancer was in fact contained so that he lean through ward prevention, recommending to continue HT. The initial diagnosis data and the findings from surgery may have lead him to believe in HT, in spite of telling you that "... the cancer was contained within the gland...".

HT after RP would not harm the outcome of surgery, it is palliative and could be started at any occasion without loosing its benefits. Radiation also can be done at any time (after RP recovery) but one should consider the possibility of an eminent spread to areas difficult to be treated later with RT, which information may be at the hands of the doctor, suggesting that such also do not exist.
Unfortunately you never shared the whole information  with us [image studies, prostate size, volume of cancer found within the gland, existing typologies other than cancer (calculi, BPH, etc), number of dissected lymph nodes, etc] found so that we cannot over opinion on the decisions (yours or of the doctor) to help in your thinking.

Overall the doctor you are referring to (maybe his surgeon urologist) seems more reliable than the previous one so that I would recommend you to trust his suggestions and follow the recommendations till apparent recurrence is set in, if ever.

It is a fact that, if surgery has solved the problem in getting rid of the cancer totally then additional treatment is not necessary. Instead of benefits the patient would suffer with added risks and side effects. But this is also the reason why doctors never mention the word "cure" to those diagnosed with PCa and then treated. The outcome is ambiguous, loads of guessing and we do not know which side to follow, but in the end that's what cancer is all about.

At the end of the adjuvant HT, if any, your next step is to wait for a surge in a clean PSA (not under the influence of HT) above a nadir to evaluate any development.

Best,

VG 

 

 

Old Salt
Posts: 732
Joined: Aug 2014

To make this discussion more focussed, it would be REALLY informative to have a PSA test result now that the prostate is gone. Vasco hinted at this as well, and to make this number as informative as possible, I agree that it should be done prior to resumption of HT.

Pathfinder
Posts: 55
Joined: Jun 2016

Thank you for your comments.

To reiterate, the doctor didn't really suggest HT after surgery. It was more our raising of the question regarding potential benefits. He considered it and then accepted a course could be beneficial. As VGama said, this may be because of the neural invasion or potential for escaped cells - we can't know for sure.

It's too late to get that clean PSA unfortunately, since HT has already been administered, and we're frustrated about that too. So we will need to end the HT to get that reading.

Which highlights the question again of whether or not HT is actually beneficial currently. I've read some information that, to reduce side effects (which my father in-law experiences) a monotherapy (only pills or only an injection) rather than a combined therapy is better at reducing the effects. 

Additionally, since there is a finite period where HT can have an effect, I'm wondering whether or not we shouldn't stop for the time being and watch the PSA for changes.

Regarding the pathology report, believe me when I tell you the level of detail was almost non-existent. If I had more information I would most certainly share it with you. :(

Any advice about what to do with this HT business would be appreciated.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I sincerely recommend you to inquire on the above and follow his doctor's advices.

HT drugs are palliative, cause side effects and work better on low aggressive hormone dependent type of cells. This action can be verified via testosterone and PSA tests. The PSA test should be done at two weeks post surgery (even under the effects of HT) to serve as an initial reference mark (this cannot be used to judge surgery outcomes or progression of the disease but it is helpful in checking drug's action). The test, then, should be done every two to three months during the first two years (most recommended). The testosterone can be done together with the PSA but it requires only one time per year, if he gets Zoladex (or similar). Both tests can be obtained at a local reliable laboratory.

Other recommended tests for those under hormonal therapies are a bone density test (DEXA scan not the scintigraphy bone scan) for screening bone health (HT deteriorates bone and cancer spreads to weaken bone), Heart health and the lipids should also be checked annually.

Best,

VG

Old Salt
Posts: 732
Joined: Aug 2014

It might be useful to know what kind of HT your Father-in-law is getting; a 3-month (?) Lupron (?) shot or something else? Whatever, let's see what his testosterone level will be (it should go way down to 'castrate level' in less than 3 months). And let's get those PSA results, every 3 months or so. Vasco has given you some more detail about the frequency of these tests.

I send my support to your Father-in-law for his recovery from the surgery. He will also have to face the side effects of the HT, but this varies quite a bit among individuals.

 

Pathfinder
Posts: 55
Joined: Jun 2016

Hello again, Thank you for your recent comments. He is on Zoladex (monthly injection) at the moment and Bicultamide pills (daily). We are really considering stopping HT and waiting to see the true PSA result. We believe it was a mistake to go back onto HT post RP and that the doctor was simply following our request. He didn't explicitly suggest to resume HT, and in-fact pointed out it's use directly after RP was controversial. We would like to find out the result of the surgery, most importantly! And while on HT it isn't possible to get a true PSA figure. If the true PSA is low enough, then HT isn't even necessary. So can I just ask: - Is it dangerous to go on HT, then off, then on and off again: will this create resistance to the drug (the period of suspension of HT has only been very brief. A week for the surgery and that's it. Now resumed for about a week. - Isn't it better to stay off HT for as long as possible? Because eventually the drug will form resistance. If the PSA is low enough after the surgery, then isn't it best to stay off HT until it's actually needed? Thank you for your continued advice!

Old Salt
Posts: 732
Joined: Aug 2014

I can't comment in detail (traveling), but I think that getting off HT is the best course to follow for now.

Of course, it will be awhile before the effects of the Zoladex are worn off.

Pathfinder
Posts: 55
Joined: Jun 2016

Thanks Old Salt for the response. We checked some details of the pathological report to try to glean some information regarding the HT. He has an AR +++ rating, which falls into the category "AR OVEREXPRESSED" according to a chart for Bicultamide treatments.

Is this a bad thing? I can't seem to find any direct information regarding 'overexpressed' AR readings. The doctor didn't flag it as an issue (or mention it at all), but my Father-in-law's side effects from the HT are quite pronounced.

Could someone enlighten us as to what the expression readings mean?

Thank you for your help!

 

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

The AR+++ finding means that the cancerous cells are of the type "hormone dependent" (those that live by feeding on androgens). In other words, they respond well to hormonal treatments (treatments that block feeding), providing the patient with wider possibilities in control of his disease. The hormonal arsenal is vast with several types of drugs used at several levels of action, keeping the cancer in an indolent sort of status.

The side effects experienced by patients are almost all due to hypogonadism (low levels of testosterone in circulation) or due to the lack of androgens being absorbed into body systems (blockade of cells AR). Menopause like symptoms are common. Others nasty symptoms are caused by imparred pituitary function (blurred vision, miss-recognition, mood chances, etc.).

In this regards, intermittent administration of HT drugs becomes a better modality but it requires a proper schedule of ON/OFF periods (typically 18 months ON). The ware off drug's effects takes approximately 3 to 6 months after the end of its effectiveness period (the end of one month Zoladex would occur at the end of 4 months counting from the date of administration).

These links may be of help to you;

http://csn.cancer.org/node/244938

http://csn.cancer.org/node/241249

http://www.mayoclinic.org/diseases-conditions/male-hypogonadism/basics/symptoms/CON-20014235

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/hormone/general-side-effects-of-hormone-therapy

Best

VG

 

Pathfinder
Posts: 55
Joined: Jun 2016

Fantastic, that's very useful.

So essentially the A+++ reading indicates that the drugs are having a positive (and required effect) on cancerous cells.

At the moment we haven't stopped the HT. It's still in discussion. Now we understand what overexpression means, that's one aspect not to worry about. However we have spoken to several sources in China regarding whether or not to stop the HT temporarily to check the real PSA result. Some people suggest because he was a Gleason 8 with a PSA of 25 prior to surgery, that staying on HT for an extended period post surgery may be for the best. We know there was a minor infection of the nerves, which is another reason why perhaps HT could be worth continuing. But at the same time, as Old Salt suggested, it may be better to check the PSA after suspending HT for 3 months to see the effects of the surgery. If the PSA is low enough, HT may not even be necessary.

Of course we're looking to avoid recurrence, and at the moment, it's a case of whether or not to keep on HT until salvage therapy via radiation treatment.

His side effects are general feelings of discomfort brought about by hot flashes and several large itchy bumps that appear on the neck. I would imagine he was a person of lower testosterone levels normally (that's not scientific, more an observation!) that would explain the side effects based on your information.

I appreciate the help guys, if you have any further advice regarding the HT question, please feel free to share your thoughts.

Thank you!

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

You got enough information on HT to make a decision on how to proceed, and to pass "instructions" to China, if your fatherinlaw has no power to decide by himself. Both ways you pointing out are good.

In any case, your relative should have a doctor he trusts and feels confident to help in following his case. PCa is not a mere cold disease to be treated over the counter. It is a serious affair and it should follow a coordinated strategic plan with timely actions. I have suggested above a number of important tests you should request to evaluate his case and status. Don't sleep on that.

VG

 

Pathfinder
Posts: 55
Joined: Jun 2016

Hello all,

Bringing this thread back to life after almost two years to update you and ask for your continued advice and support. 

Synopsis:

All the Gleason information and pathology reports were provided above. Following all our previous discussions and your advice, my father in-law went for open surgery to remove the prostate in Shanghai (expensive but the best option in China). He resumed ADT immediately after surgery and stayed with it for about a year. 

His PSA reading was around 0.03 post surgery and even when on ADT. Approximately 3 months ago it was recommended stopping ADT as the side effects were fairly strong, and monitoring the PSA for changes. 

Although the post surgery pathology report suggested that the cancer had not broken through the capsule and no lymph nodes were infected, his PSA velocity after stopping ADT is alarming and (possibly?) suggests otherwise. 

Here are the PSA readings post ADT:

ADT STOPPED: 2017/6

2017/9 - 0.01

2018/1/2 - 0.03

2018/2/28 - 0.10

2018.3.20 - 0.12

2018/3/23 - 0.16

As you can see the velocity is increasing at a worrying rate. And we're worried! Last two checks and it's moved 0.04 in only 3 days.

We're now prepared to go into salvage RT as quickly as possible, but we're faced with a predicament.

The city in which he lives only has a PET CT scanner. We have been informed at the current PSA level the machine may not detect anything at this level. In Shanghai there is a PSMA scanner, which is far superior and fit for purpose, and in Beijing there is a PSMA-PET CT which is top of the line. The problem with both of those options is a waiting time of 3 weeks +.

We estimate at 3 weeks + his PSA will be at 0.4+, which is well beyond the risk we would like.

My idea, and I hope you can comment on this, would be to return him to ADT immediately to control the speed of the PSA increase while he waits to get onto a machine that will have a better chance of finding the location of the cancer cells. Some suggest this will either make the scan even more difficult to find anything because the ADT shrinks the cancer cells, or that on/off use of ADT will more quickly lead to permanent ineffectiveness. 

But I'm wracking my brains and I can't think of any other solution. Other people seem to have slow to moderate PSA rises, giving them time. We don't seem to have that luxury sadly, but we seem stuck with the following options:

- Do the basic PET CT and hope for a result. If no result go on the waiting list for the PSMA in Shanghai, wait 3 weeks by which point the PSA will be 0.4+

- Save money, don't bother with the PET CT, wait until Shanghai to do the PSMA scan by which point the PSA will be 0.4+

- Go back on ADT, control the PSA, wait for Shanghai or Beijing machines and then hope that they will pick something up in the scan that's usable after the ADT has shrunk the cancer cells.

 

Any advice here is greatly appreciated. At stage one you guys helped us so much, and I studied everything and anything you said and in the end it helped us make an informed decision. I hope you can give us whatever advice you may have now. Thank you for your help!

 

 

RobLee's picture
RobLee
Posts: 261
Joined: Feb 2017

All of your concerns are valid, except for the rapid PSA rise. Going back on ADT would likely be coiunterproductive for the reasons you stated... it will shrink any tumors making them more difficult to visualize, and may even hasten the onset of catrate resistance. I would say it's best to wait for the most effective scan available, even if that means waiting three weeks. You want to use the best equipment and for the disease to be as bad a possible.  0.4 is not really that high. Some scans cannot detect anything at PSA's under 2.0 and many oncologists still use 0.2 as the threahold for intervention... some even higher.

Pathfinder
Posts: 55
Joined: Jun 2016

Thank you for your comment Rob, much appreciated! So just so I'm clear, 0.4 is not something we should worry about regarding a threat of metastases? Because in my head the PSA velocity is tied to a risk of that kind of thing.

Also, would you then suggest a higher PSA is better for visibility in the scan? For example, if we went to Beijing where they have the best scanner (PSMA-PET CT) what are the chances that that wouldn't be able to detect anything meaningful at the current 0.16?

Thanks once again!

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I agree with Rob's comment. Wait for the PSA to increase further and get a PSMA PET/CT scan done before the salvage RT. I never heard of such traditional CT doing a PSMA scan. Probably you miss interpreted the information. The exam involves PET and CT machines individually or the modern one that does both (PET + CT) in one unit. In any case, the exam done at his place could be using the radiopharmaceutical PSMA too but using a different isotope. Check the specifications at each place and chose the 68Ga PSMA PET/CT scan. This tracer seems to be reliable at a PSA above 0.6 ng/ml.

Without the image study, the field of attack in the radiation treatment would be done guessing and the protocol would be the same if the PSA were 0.4 or 1.0. He can wait with no prejudice to the outcome. Do not rush again. His type of PCa was hormone dependent so that ADT will surely work again no matter the level of the PSA when he starts it.

VG

 

 

Old Salt
Posts: 732
Joined: Aug 2014

The two comments posted above make sense. Moreover, you need to consider that each PSA measurement has some error. The apparent rise from 0.12 to 0.16 ng/mL (in three days) may not be as bad as it seems.

Pathfinder
Posts: 55
Joined: Jun 2016

Thank you all for your responses. We're now realigning our approach to this. Additionally there is some new information to share and request your advice regarding.

Shanghai has a PSMA-SPECT CT machine with a waiting time of 3 weeks. There is currently a special reduced price for this machine, which is contributing to the queue time.

Beijing has a PSMA-PET CT (apparently the best possible) with a queue time of just 2-3 days. It's more expensive but it's also the best technology.

There's one thing we're confused about particularly. Although your advice is well taken and much appreciated, the EUA guideline confirmed that patients treated with a lower PSA with RT have a better prognosis compared to those starting treatment at PSA>0.2.

Now PSA detection technology is becoming more accurate many scholars suggest the value of 0.2 for chemical recurrence should be reduced.

With this in mind, and knowing the options for either Shanghai and Beijing's machines (and associated queue times) is there any reason we should go for the shorter queue time in Beijing at this current moment? Because at the current PSA velocity he will be at 0.2 fairly soon. Our only worry regarding going earlier is spending the money on the treatment and having the machine not detect anything valuable.

Thanks again for your insights regarding this.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

My lay opinion in the best approach is what I describe in my above post (PSMA-PET CT ). In regards to the EUA guideline, the prognoses you point out refer to the period of biochemical free failure not the elimination of cancer. Surely starting RT earlier is not prejudicial but if the RT protocol includes targets found in image studies it will surely has higher chances for a better outcome. If interested in details, please read the chapter 6.3 "Management of PSA-only recurrence after treatment with curative intent" (which also explains in detail the PET/CT capabilities in detecting cancer) in this link;

https://uroweb.org/guideline/prostate-cancer/#6

Best,

VG

Pathfinder
Posts: 55
Joined: Jun 2016

Thank you for your response. I and other members of the family read through chapter 6.3 and it's been very insightful. Based on the information provided we feel that Beijing with the PSMA-PET CT is our only good option. It's the only one in the country and the rest are under par. By the time we have arranged the trip to Beijing and been queued, the PSA will likely be around 0.2+, possibly close to 0.3. According to the guidelines you linked, a result should be possible with the PSMA-PET CT when the PSA is in this range. Would you agree with that estimate?

Thank you for your continued support!

 

 

Old Salt
Posts: 732
Joined: Aug 2014

Notwithstanding the increase in sensitivity, your Dad is at, or close to, the detection limit of the PSMA-PET technology. The skill of the radiologist will play a role in interpreting the results. But be prepared for a negative ('couldn't find anything') outcome.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

There is always the probability of a negative result even with a PSA of 0.3 ng/ml. Micrometastases are at risk of not being judged as cancerous because it doesn't form a solid tumor. Old Sal tries to reflect this aspect because the interpretation of the images (in SUVs) is subjective to the interpreter, the nuclear physician judging the image and providing the results. It is always better to get a second opinion on the images. In any case, at present, the 68Ga PSMA PET/CT exam is the best one can do to identify and locate the bandit.

This is your best to advance further. Next comes the experience of the radiologist that will define the RT protocol using this exam's information.

Best wishes,

VG

Pathfinder
Posts: 55
Joined: Jun 2016

Hello all,

 

Today we got the results back from a simple MRI done locally. The result is that the cancer appears to have invaded the bladder. This would explain the fast PSA rise. 

The hospital says that this finding is enough to start RT, and we do not need to go to Beijing to do the PSMA-PET CT. We are now confused about the next step. The local hospital recommends we do a bone scan to check for any metastases, but we're worried that the machine is not powerful enough to detect the detail properly after hearing of a case where nothing was revealed on a bone scan but later metastases was discovered on a PSMA-PET CT.

Would you advise going to Beijing immediately to do the PSMA-PET CT or go straight into RT locally? Also, we do not know if RT can be performed on the bladder area?

We do not know the complications a spread into the bladder entails, but we are all devastated by the news today. We don't understand how after the good prognosis following prostate surgery and a year of ADT has still resulted in this spread. It's impossible to predict of course, but it's a difficult time. 

Any advice would be genuinely wonderful at this stage, as China isn't the best place to get help. They don't have your interests at heart.

Thanks once again.

 

EDIT:

 

Here is some of the MRI information:

Surgery area found a fat-like lump measuring 5.8cmx4.4cm (908IM36). The line between the lump and the top of the bladder wall is unclear. Conclusion is BCR with bladder invasion.

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

I am sorry but I cannot help you in decisions. The PSMA-PET CT also detects cancer in bone and it is much better than the traditional bone scan. You should choose the image exam you feel more confident with. In regards to the radiation treatment you should also get the opinion from a radiologist, not just the urologist.

 

Old Salt
Posts: 732
Joined: Aug 2014

Sorry about the bad news. But I would ask for a second opinion on the MRI, especially since the result may be crucial in mapping therapy.

Pathfinder
Posts: 55
Joined: Jun 2016

Thank you again for all your comments. 

Since this tumour has been found we're back in sprint mode. Everyone is rushing like crazy to make a decision and it's killing us because of all the conflicting information.

The local doctors advise that travelling to Beijing is not worth the expense. In their opinion since something has been found on the MRI it's now only necessary to do the bone scan and then maybe the PET CT afterward to check for metastases in other organs.

My judgement is telling me to go to Beijing and do the PSMA PET CT for the extra expense because that will give peace of mind regarding all the possibilities and then we will have a clearer idea of our treatment options. 

The only problem is time: locally things will be speedier. Going to Beijing could add several days to the process.

At this stage would you also consider time to be a pressing factor?

Thank you for your help!

Old Salt
Posts: 732
Joined: Aug 2014

In My Humble Opinion, a few days won't matter. 

Also, IMHO, finding spots with the more sensitive PSMA-PET procedure that would be missed otherwise, would be helpful. If such a spot would be identified, one could irradiate it. Just an amateur/armchair opinion, of course!

Pathfinder
Posts: 55
Joined: Jun 2016

Not at all, we find your help invaluable!

As it stands we're slightly stuck because there's a traditional festival in China that will see all hospitals close for 3 days (yes, this happens) meaning we can't be seen until around the 7th or 8th. 

On the upside we have made a decision. The original Shanghai surgeon has requested we return to him, he wants to inspect the patient and review the MRI. He will be providing a second opinion and has PSMA-PET that we can use for closer inspection. Flight there is on the 6th. We're hoping we have some options going forward. 

Thank you again for your kind support.

Pathfinder
Posts: 55
Joined: Jun 2016

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!

VascodaGama's picture
VascodaGama
Posts: 3240
Joined: Nov 2010

Any added treatment will surely add risks and side effects to the ones already set in. The patient surfers and his quality of life become worse. Radiation, therefore, should aim proper targets to avoid collateral damage of benign tissues. Those targets should be identified and located firstly to serve as the field for the radiation. When targets are not identified then the field to be radiated is decided on guessing and involves a wider area of attack. The typical is the whole prostate bed, localized lymph nodes and pelvic bones.

The outcome of a salvage radiation therapy (wider field or spot) is not restricted by the level of a PSA of 0.5 ng/ml, and it doesn't assure better results solo based on the level of a PSA. The success of the treatment is higher if the whole targets fall within the field to be radiated. Surely radiating the whole body one would be more assured of success but the consequences would be greater if not killing the patient. Radiation is not done as zipping out an area. Minimizing the field to avoid further damage is best so that reliable image exams get first priority. No one expects to hit the bull' eyes in the dark. Luck should be on our side.

Please note that in PCa affairs rushing to a decision on a treatment doesn't provide any assurances of a good outcome.

Wishes for luck in his journey

VG  

 

Pathfinder
Posts: 55
Joined: Jun 2016

edited and reposted to include responses to others.

Old Salt
Posts: 732
Joined: Aug 2014

I agree that a decision is not at all straightforward. A relevant consideration is: what does the patient want? Vasco pointed out (see the post above) that irradiation of the whole prostate bed may have side effects and should be discussed with the patient.

I tend to favor the advice of the Shanghai doctor(s) because their expertise seems to be good, if not excellent. Another argument in favor the Shanghai approach is that although it may seem nice to point irradiate 'hot spots', it's likely that there are other spots in the pelvic area that have 'micro' cancers that don't show up on the scans (as yet).

Nevertheless, if possible, please discuss the two options some more with the Shanghai (or other) medical oncology specialists. See if my argument holds. Perhaps that will make it easier to arrive at the best decision.

Best wishes; I am impressed with your care and concerns.

Pathfinder
Posts: 55
Joined: Jun 2016

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.

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VascodaGama
Posts: 3240
Joined: Nov 2010

Pathfinder,

A PSMA-PET exam will show where probable cancer is hidden. Such doesn't imply that the radiologist will avoid radiating the traditional areas of a salvage therapy in a RP failure case. I believe that the radiologist will always radiate the prostate fossa. He may not include the local lymph nodes (to avoid lymphedema) and pelvic bones (to avoid bone marrow depression), if the exam is negative in those areas, but cancer at far places could exist and be detected in the exam. Those areas should also be radiated at the same time of SRT. Radiation should not be planned/projected to be repeated (applied twice) to the same area for the risks of fistulas.

Moreover, spot radiation does not incorporate a single one point as a target. The whole cone shaped tissues in the path of the ray will be irradiated. These represent a big volumetric quantity of benign tissues that receive unneeded radiation. Surely the radiologist will define the isodose area more accurately with the results of the PET scan and his plan (direction of rays path) will avoid critical directions that could affect other organs, etc.

The experience of the physicians involved and the facilities will weigh in the outcomes.

https://www.mayoclinic.org/tests-procedures/external-beam-radiation-for-prostate-cancer/about/pac-20384743

http://www.upmc.com/patients-visitors/education/cancer-radiation/Pages/bone-marrow-depression.aspx

 

Best,

VG

Pathfinder
Posts: 55
Joined: Jun 2016

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!

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VascodaGama
Posts: 3240
Joined: Nov 2010

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

Pathfinder
Posts: 55
Joined: Jun 2016

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!

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VascodaGama
Posts: 3240
Joined: Nov 2010

I do not know how to respond to your query. I am not in China and do not know the details regarding the physicians (experience or specialty) and the facilities. In any case, the best outcome can be expected from the best isodose planning (designed by the radiotherapist) and the performance of the equipment that delivers the radiation (image guided capability or proper CT/MRI to define alignments). To such extent, experienced physicians and modern facilities are best.

In regards to your comment in continuing the radiotherapy at a different hospital, such is possible if the newer institution is informed of the details of the isodose planning and what has been administered. Radiation is absorbed by the tissues which got limits in terms of Grays, so that over administration at the same place can be avoided.

One aspect in IMRT sections is that the patient needs to live closer to the RT facilities because he will be receiving doses everyday (except Sundays) during two months. I see no trouble if your dad's doctor is an experienced radiologist and the equipment is modern. Old types cobalt machines were linked to nasty side effects. The worse risk is the lack of maintenance (calibration, tolerances and alignment) of modern machines that in critical cases lead to fistulas and the death of the patient. Surely the same applies to Beijing's hospital. 

VG

Pathfinder
Posts: 55
Joined: Jun 2016

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

Pathfinder
Posts: 55
Joined: Jun 2016

Guys, there's a problem, and I'm concerned. 

My father in law has had 11 RT treatments as part of his course. The PSA check today was 0.299. Two weeks ago prior to starting treatment it was 0.251. 

After all the extensive tests prior to starting RT there was no sign of cancer detected anywhere in the body, leading the doctor to believe that the cancer cells were still located in the pelvic region. As such, the RT treatment concentrates only on the pelvic region.

On consulting the doctor regarding this PSA rise, he concurs it shouldn't rise. He says it may be to do with the PCa itself or another factor. We can only surmise the following:

- The PCa has moved to a part of the body beyond the pelvic area (although this is fairly unlikely based on the short time since prostate removal surgery, hormone therapy and results of the tests, but certainly not impossible given the nature of cancer.)

- The equipment being used or the operator is not good enough and the way the treatment is being performed is at fault

- The PSA reading is wrong and part of a wild fluctuation.

Now, asking for advice, I have this nagging voice that keeps telling me we should have gone to China's no.1 hospital for RT in Beijing, even though Shanghai is still considered good. In the event that I elect to move treatment to Beijing, how complex is it to pause the treatment, and for how long is it safe to pause and resume treatment (window of arrangements essentially)? Is it still possible to do this after 11 treatments.

Additionally, in your opinion, would it be sensible to pause the treatment regardless of where it's resumed to redo bone scans, PSMA PET CT and MRI's for the body another time?

If possible I'd like to get as many of your thoughts as possible regarding this, so if you have any experience or ideas about any of these things, please don't hesitate to chime in. 

Thank you all again for your invaluable support.

 

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VascodaGama
Posts: 3240
Joined: Nov 2010

I am surprised on your post and curious that they checked the PSA in the mid of the RT administration. The radiation treatment will cause inflammation and such will increase the PSA which result has no significance to judge cancer status. This is a normal occurrence and the increase can only mean that some cells are receiving the rads blow. This is GOOD.

I wonder the experience of the radiologist involved in the treatment. Your comment on doctor's suggestion that "it shouldn't rise" is completely out of pace. Are you sure that the person in China informing you on the above was correct? The comment you lay here "... he concurs it shouldn't rise ..." is the opposite of what the doctor may have said but your relative listen erroneously.

Typically, after completing the treatment, the first PSA test is done two month later (one month the earlier) but the one which will have significance to judge the treatment is at the 6 month mark. The outcome is usually judged at the one year mark. In my case of RT, PSA nadir was found at the 13 months post the end of the last section.

????????????????????

 

 

Pathfinder
Posts: 55
Joined: Jun 2016

Really?

Well the issue is twofold. One, this is China, it's hard to find anyone who knows exactly what they're doing, and two, the doctor is the person who performed the PC surgery and not the radiologist, so perhaps it's not his area of expertise. Still, I would think he would know better about this since he's the one who designed the RT plan in cooperation with the radiologist.

We just spoke to the doctor this morning about this issue. His suggestion is to continue RT for 2 weeks and then check PSA again. His reasoning seems to be that because the PSA rise is consistent in speed with his regular PSA rise (around 0.05 increase every two weeks - before it was 0.25, now it's 0.3) his concern is that despite all the tests the cancer may have left the pelvic area, meaning the concentration in that area alone is not effective. He doesn't seem to think that the fluctuation correlates with RT because it's not wild enough and follows the PSA's previous trend. At least that's what we can glean from his comments., 

Additionally, checking the official guidelines and getting advice from a paid online doctor, it seems that ADT combined with RT has 20% more effectiveness in successful RT and improving life expectancy. Following this advice we wanted to start ADT today to hit the cancer as hard as possible, but now we have this quandary of the doctor wanting to wait 2 weeks before rechecking the PSA. Under ADT there will not be an effective reading of the PSA two weeks from now. 

In this situation it's complicated for us to figure out the next step. I suppose it is possible that despite all the extensive testing in the body, distant metastases may have occurred but not have been found, but it's impossible to say without further testing, which may not be available during RT.

Any advice is appreciated!

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VascodaGama
Posts: 3240
Joined: Nov 2010

I think it better for you to follow his doctor's advice. He is the one on the ground and surely knows what he is doing. I think him to be from the old-guard caring and treating according to the traditional guidelines. He may not follow the latests practices/recommendations (NCCN, version 2, 2018) but that doesn't mean he is doing a bad job. Survivors in this forum are not doctors and do not give professional advices but lay opinions. We try being helpful explaining what we know or has experienced. I also think that the advices from paid online doctors should be taken just as informative. You need to trust the doctors involved in his treatment (even if in China), but can and should be inquisitive and discuss all matters when a final decision is required. For the time being I think you should continue the treatment as initial planned.

By tradition, urologists are the ones in charge of treating prostate cancer, who will also be the surgeon performing the prostatectomy. All other physicians involved in the therapy (Pathologists, Radiologists, Oncologists, Nurses, Technicians and Equip-operators) will be called upon by the commandant to execute their part when this is required. These specialists do not contest the urologist but follow his requirements.

The job of an urologist in sequential treatments are minimal once the prostatectomy is done, however, they still are the ones by norm responsible and will overlook the continuing treatment of that particular patient. This is an antique behavior and very questionable today in all forms for treating cancer. Prostatectomies are no more the golden standard in treating PCa.

The methods used by your doctor are considered as normal practice. He didn't follow the combination therapy of ADT plus RT (your post of May 13) but you did not insist in having it too. Someone in China has signed the papers agreeing with the protocol. In any case, nothing is wrong by checking the PSA periodically along the treatment. The bad would be to give up with RT in the mid of the full scope of application just because the PSA has increased.

Now it is the time for everybody to wait, let the treatment continue naturally and latter check the behavior of the unmasked PSA. Any additional intervention (ADT) should only take place if recurrence (biochemical failure) is found. The norm to judge such case is; Three continuous increases post a nadir. Do not rush.

Your dad will start having constant bowel movements and irritation when urinating. These are natural symptoms caused by the radiation that can last over two months. His doctor will provide medication and your dad should avoid certain foods to alleviate the problem. He needs to continue drinking loads-of-water 30 minutes before each RT section.

Best wishes for an eventless treatment,

VG

Pathfinder
Posts: 55
Joined: Jun 2016

Hey, thank you once again for your response. Navigating this surely is problematic but I think I have a slightly clearer picture of the options now. There are a few points I'd like to discuss.

We followed your advice and visited the doctor with more detailed queries. The way he sees it is as follows: He believes that we should wait 2 more weeks continuing on the RT course, and then retesting the PSA. If the PSA shows a drop, then he suggests not using ADT yet. This is because he believes ADT use should be prolonged for as long as possible because it only has a limited time for effectiveness. By waiting 2 weeks and seeing the PSA result we will have a clearer idea of whether or not the RT is having an effect and then be able to make a decision from there. He thinks  that the cancer should still be confined to the pelvic area because the PSA is still low, although he can't rule out distant metastases either. If after 2 weeks the PSA has risen by a big jump, that would suggest distant metastases because it would show that the RT is not having an effect. In this case he would suggest using ADT immediately. If the PSA is the same or only slightly higher than now, perhaps metastases isn't the case, but he may suggest ADT anyway.

My quandary is this: All the guidelines, forum moderators and online doctors for whom we took paid advice, suggest ADT and RT combined from the start of the RT treatment. Now, please correct me if I'm wrong, but is this because RT weakens the cancer cells? And therefore by weakening them it makes them more susceptible to being wiped out by radiation? Because that makes some sense to me. The doctor of course said it's our choice and we can start ADT tomorrow if we prefer. The ADT will continue for 6 months before stopping and then the PSA will be retested to see what has happened post RT and the effectiveness of the treatment.

I'm torn here. I see pros and cons on both sides. On one hand I would like to prolong the use of ADT as much as possible, because my father in-law already took ADT for almost a year post surgery. There's no guarantee, but I worry that on/off use of ADT will diminish its effectiveness more rapidly, and since it's the last line of defence it makes me hesitate and wonder if, after 2 weeks, the PSA has fallen, we can't just prolong it further. On the other hand you only get one chance at RT in a specific area (in this case, pelvic). And I want to make it as effective as possible. If combined ADT and RT is the best chance we have to kill cancer cells - assuming they're in the pelvic area - then I don't want to jeopardise that opportunity in any way. In another two weeks he will have reached the 22nd RT treatment out of a course of 35 - almost finished. I'm worried by then that the opportunity to effectively combine treatments may be on the late side.

I hope this is all clear. Any questions please feel free to ask. I do understand your suggestion to listen to the doctor, but he's certainly not pushing us either way and also agrees with the general guidelines of combined RT, just maybe he doesn't want to use ADT unless deemed absolutely necessary. Thank you once again for your invaluable help.

Grinder
Posts: 457
Joined: Mar 2017

You said:

"suggest ADT and RT combined from the start of the RT treatment. Now, please correct me if I'm wrong, but is this because RT weakens the cancer cells? And therefore by weakening them it makes them more susceptible to being wiped out by radiation? "

Did you mean to say "is this because ADT weakens the cancer cells"? Is your question regarding the role of Androgen Deprivation Therapy in cell actvity?

This is excerpted from cancer.gov to help understand the role of androgens in prostate cells, both normal and cancerous:

"Androgens are required for normal growth and function of the prostate, a gland in the male reproductive system that helps make semen. Androgens are also necessary for prostate cancers to grow. Androgens promote the growth of both normal and cancerous prostate cells by binding to and activating the androgen receptor, a protein that is expressed in prostate cells (1). Once activated, the androgen receptor stimulates the expression of specific genes that cause prostate cells to grow (2).

Early in their development, prostate cancers need relatively high levels of androgens to grow. Such prostate cancers are referred to as androgen dependent or androgen sensitive because treatments that decrease androgen levels or block androgen activity can inhibit their growth.

 

Most prostate cancers eventually become "castration resistant," which means that they can continue to grow even when androgen levels in the body are extremely low or undetectable. "

The goal of ADT is the suppression of androgens by inhibiting the production of testosterone... the androgens activate prostate cells, whereas if they are deprived of androgen, they remain dormant, until they become "castration resistant".

Hopefully de Gama can explain better how that should or should not play a role in  the treatment.

 "Cell growth" can refer to both cytoplasmic volume increase of the individual cell, or cell division and replication. In this case I suspect it means replication, causing the cancerous cell colony to grow.

contento
Posts: 76
Joined: Jul 2017

Pathfinder, I don't know if this will help your father in law  or not but a few years ago I had reoccurrent cancer and I had to decide whether or not to include hormone treatment as part of the recommented salvage RT protocol. My doc explained that the HT would sensitize and shrink the tumor making it more receptive to the radiation. The plan was for me to get ( 2 ) 3 month Lupron shots over a 6 month period along with Casodex. As you point out because your psa essentially goes to zero due to the HT you won't know if the RT was effective or not for about 6 months after your RT treatment. In the end I chose to do the HT with the RT based on the advice of the radiation oncologist that believed Id have a higher chance of success if I chose that route. I guess she was right as my psa was and still is non-detectable.

Hope this helps --contento

Pathfinder
Posts: 55
Joined: Jun 2016

@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.

 

lighterwood67's picture
lighterwood67
Posts: 270
Joined: Feb 2018

The folks on this site are giving you their experiences with this cancer and their extensive knowledge of the cancer.  From what I can tell there is no silver bullet for this cancer.  There are treatments which have yielded good results and results with no significant impact.  My decision for RP was based on what I was told from the surgeon and the radiation onocologists.  I was told that in my case the cancer was contained (had not escaped the prostate).  I did the surgery.  Surgery is permanent (removal of gland; 8 pelvic lymph nodes; bladder neck reconstruction). Before the surgeon removed my prostate, he took a section of tissue out at the bladder neck and gave it to the pathologists.  No cancer in that sample, so he proceded.  The surgeon was very thorough in providing the pathologists with tissue from several avenues (perineural, urethra, bladder neck, seminal vesicles, pelvic lymph nodes) for escape.  No cancer. I have talked to four people who have prostate cancer.  Three of them had some type of HT; RT; Chemo treatment.  One is Stage 4 going into hospice care; one just started, in his 50's, says he feels like he is 100 years old (no energy); one says he is doing fine, but wished he would have went with the RP, but at this time he is still ringing the bell (he is winning).  As the folks on this site have told you, all of the treatmentts have side effects.  I wish you well in all of the decisions you make and hope for the most positive outcome.  To me it comes down to sooner or later you are going to have to fly that airplane, hopefully you land safely.  Good luck to you on your journey. 

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