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One further thought that I regretted omitting from my prior comment:
When you visit your oncologist on Monday I suggest that you have a person accompany you, one who you respect. That will ensure that you are hearing and understanding correctly, and may also bring forward other questions that need answering. And before approving any new treatment plan, be sure that you are clear that you want to proceed in that way. If you have any doubts then I suggest that you merely ask for a couple days to think it over. That should be readily granted.
Thank you for the advise. Yes I am definatley going to take a couple of days to think over any (ADT or radiation) treatment plan the radiation onoglosist suggest. That was my plan. Also before proceeding I want to see what the results of the second PSA test my urologist orderd. I will give the blood tommorow and have the results in a couple of days.
Just got through talking with the ono. He was more open but was suggesting radiaton and waiting for ADT. His thinking is that if I do both ADT and radiation together we won't know if the radiation worked because the ADT would also lower the PSA.
This would tell if I have micro mets. I think I will continue on with radiation. Not sure about ADT yet.
Well talked with RO today. She wants me to start ADT (Lupron) followed by EBRT (ROs always want that).
Her reasons were 2 fold
1) With the PSA not undetectable (.36) there could be some Pca cells around the prostate bed.
(I pointed out there could be other reasons for this as Terry mentioned in this discussion)
2) On my post surgery report apparently there was some tumor involvment with the uretha.
I'm not going to rush into this treatment. Going to wait for the repeated PSA test and get a Medical Oncolgist view of this.
Wilbert, congratulations on not rushing your decision. There are very few occasions (and I don't think yours is one of them) when immediate action is essential.
I was a bit puzzled by the comment ....my post surgery report apparentlythere was some tumor involvment with the uretha...
Have you not seen a copy of your report to see precisely what it says? I really cannot emphasise the importance of making sure that what you are being told matches what the report say - see the thread 'From 0 to 60' for an excellent example.
Good luck - and hopefully your oncologist will give you some good, balanced advice.
On my comment of "surgery report apparently there was some tumor involvment with the uretha..."
Yes this was mentioned in the pathlogy report. However the report also stating that the "surgical margins were clear."
I went back to the report and looked at my orginal post in this tread. Unfortunatly I reported the wrong staging also. I was very nervous when I wrote the orginal post after finding out I still had PSA, my staging should be TIIIb (Had TII in post.) The uro also reported this to me, just typed it in wrong.
Does this change your opion on the need for a quick decision on future treatment?
Wilbert,
With T3B and a PSA of 0.3 I would advise doing what the radiation oncologist is recomending ASAP. You are going to need the salvage treatment and delaying will only make your chances for being curred less likely.
I was T3B with a PSA of 0.02. It started increasing and I got the radiation/hormone combo treatment when it hit 0.2 (my cancer center's recommended threshold). For me the radiation/hormone treatment had almost no side effects except for the hot flashes from the hormone treatment. The hot flashes can get pretty difficult to take after a few months but Vitamin E stopped them in my case and there are other drugs which may also stop it. Very few of the men I talked to in the radiation waiting room were having much problem with the radiation.
Well, that does put a bit more urgency into the mix. It seemed from your fist post that there was a degree of certainty that the diseas was confined to the gland. But a T3b definition is The tumor has spread through the prostatic capsule (if it is only part-way through, it is still T2) and has invaded one or both seminal vesicles
These are the probabilities of Biochemical Recurrence(detectable PSA level) as calculated in the HAN TABLES [The figures in brackets show the range of probabilities and the percentage figure is the median]
- 3 years after surgery: 45% (19-82)
- 5 years after surgery: 63% (29-94)
- 7 years after surgery: 76% (40-98)
- 10 years after surgery: 85% (48-100)
That changes matters considerably, but emphasises, as far as I am concerned, the importance of consulting an oncologist, rather than a radiologist.
It may be that the oncologist may agree with the radiologist and prescribe EBRT and ADT, but on the other hand he may feel that the chances are greater that the disease is systemic, in which case it might be more important to have a systemic therapy to aim at managing the disease. This would be some form of ADT.
The value of EBRT may be questionable if there are good grounds for suspecting spread beyond the area which could be radiated. In that case the radiation would not achieve anything beyond creating the possibiity of long term side effects.
I think that there is value in this kind of discussion and the input of any man who has had a similar experience, but in the end we can only guide you to consider areas - the final decision must be made with appropriate input from a doctor with suitable qualifications.
Let us know how your meeting goes with the oncologist.
You ask ....after surgery a non zero PSA is biochemical recurrence
And the answer is yes and no - maybe. You have to bear in mind there are no agreed specific definitions about anything in the PCa world, just general broad understandings - and you also need to understand that words sometimes get meanings that are not what we are used to.
Strictly speaking a non zero PSA after surgery cannot be a 'recurrence' since that term really means that, after having an undetectable PSA, the PSA becomes detectable. You are not in that position, so you cannot be categorised as having a recurrence.
If we look back some years, before the ultra-sensitive PSA (with all its shortcomings) was used to measure PSA and before the advent of RALP, the 'standard' approach to tests after surgery was to wait 3 months and then measure PSA using a standard PSA test. After this time the PSA should be undetectable, which was usually categorised as 'less than 0.10 ng/ml'- the lowest level that normal PSA tests can accurately measure PSA. In the absence of any contrary evidence from the pathology results, there was a good expectation that most of the men would not ever have a detectable PSA. The men at risk of having a detectable level of PSA over time, categorised as biochemical recurrence are calculated by using the Han Tables.
Many men may well have had PSA levels measurable with ultra-sensitive tests during this time, but never knew it and went on their way, taking regular tests and living their lives. They still do this - you can see many stories on the site where men are still using regular PSA tests and still report happily that their PSA is 'undetectable' or 'below 0.10'
But since those earlier days, some surgeons have started using ultra sensitive tests and doing the tests much earlier than 3 months after the surgery. In some cases it has been found that these early sensitive tests show a PSA level that is detectable at that time, but is not detectable as time goes by. Hence my saying in my original post Because of the time it takes for PSA to get out of the blood stream after surgery, the result could be elevated because of this circulating PSA
Another point that has only come to light fairly recently is that sometimes there is a part of the gland left behind after surgery. It is suggested that this might be because of the nerve sparing techniques or because the rods used in RALP (which are straight) might not always be able to reach all the parts of the gland. It is important to bear in mind that prostate glands are not one standard size and they are not always in precisely the same place in the body. It is only when the surgeon actually gets in there that he can see exactly what has to be done - and what can be done. Hence my original comment There may be a small portion of your gland left behind - this happens from time to time, especially with the Da Vinci procedure and this may be generating some PSA.
What I didn't know when I originally posted was that you had been staged pathologically as T3b, not T2 with clear margins as originally stated, which puts a different complexion on things and may well point to a greater possibility of metastasis. The points I made in my first post are valid and should be checked. But to them, in the light of this additional information you have to consider seriously that the disease may have escaped the gland, in which case, in my opinion you should be discussing with your oncologist the importance of ADT rather than EBRT and how soon he would recommend your starting the process.
Wilbert,
The very short answer is PSA greater than 0.2 is considered recurrence by most of the research studies I've read lately but use that number in the context of all the background information Terry has provided in his post.
You are missing the point. A recurrence can only occur if the PSA went undetectable and then became detectable. The disease is then said to have recurred.
If the PSA has never been undetectable, as is the case with Wilbert, the disease cannot be said to have recurred.
The PSA may still be on the way down to undetectable for any of the reasons I mentioned previously. If it is, then it might be wise to see if the disease recurs, as indicated by a rising PSA. On the other hand, if the PSA does not go down or goes up and there is no evidence of gland left behind, then it is likely that the surgery did not deal with the problem adequately and it would be appropriate to consider further treatment,
I realise that some people will think this is nit-picking, but there is enough confusion as it is and I think it is important to try to use the correct terms as far as is possible.
No Terry, that is not nit-picking, that is clarification and I appreciate it. After dealing with this disease, and this website, for so many years you have a valuable knowledge base to share.
As always I'm the guy that reads this forum daily but rarely posts.
Thank you for the clarification. Also got the results of the repeated PSA test today, .33 , about the same as the test a week ago.Unfortunatly no lab error. In addition to seeing the onclogist. I guess the next think to do is talk with the urlogist also to see how we find out how much prostate material in left in me.
There is a good deal to absorb and I haven't had a chance to study it fully myself, but at first read it seems to make some good points for you to consider.
Terry,
Good information. My cancer center does always give the combo hormone/radiation for salvage treatment as of recently. They also wouldn't change the amount of radiation I got(66 greys). I tried to get an extra dose.
P.S. - You used the term detectable and undetectable. I was thinking that we all (including my oncologist) could be clearer if we used specific numbers. I believe undectable means less than 0.1 even though the ultrasensitive test will measure down to .008 or even less. (I have read the link on the PSA test)
Thank you for this information. This read has given me a lot of information to consider before deciding to opt for radiation treatment now (Advanjunt), or waiting (Salvage) to see if PSA changes. I think I'll show it to the RO when I go in.
Decided to go ahead with the EBRT adjunt therpy will have first treatment next week. Hoping for the best on side effects No ADT for now. Doctors want to see if PSA goes down from EBRT before going on to Hormones.
