From one who knows (3rd try)

Der Fisch and I had a follow-up session with Jeremy this morning. We both thought it went very well. Neither of us was exactly looking forward to it, but we both found it encouraging.

Following is a list of the points that were covered. This fairly long and technical. For those who don't wish to read it all, and I sympathise, the essential point is that I need another PSA test to determine what happens next. This will occur in mid-December.

Re this list:

• The first two points are not new information, and are thus tagged.
• The entire list will be mostly old news for the family member who has received this information by email. I have pretty much put new information in italics to save them a lot of repetition. 
• I made the mistake of dumping all the text in from the email, only to find that that all the messages above it in the in-box ended up in this post also! The only way I could get it even this good without re-keying it all in was to copy and paste that text into  various document formats, until I finally found one that stripped out all the formatting (.pdf). Then I was not able to use second level numbering as the email editor had provided. Anyway, I have done the best I can with it.

Anyway, here goes.

1. The PET/MRSA scans had revealed a cancer in the prostate and in one of the lymph nodes (old news).
2. The biopsy post-op revealed cancers in three further lymph nodes, which had not shown up in the scan. This is because they were quite small (more old news).
3. Consequently the chance of a cure is remote. (This is based on the proven ability of the cancer to metastasise, in this case to the lymph nodes.)
4. However, Jeremy estimated that the surgery removed 99% of the cancers. Because all the ones visible on the scans have been removed, and a few besides, any remaining ones should not be problematic for some time because they must be pretty small.
5. Two things have been achieved by the surgery: a) a de-bulking of the cancers, and b) improved local control of any that remain.
6. The next step depends on the PSA test which I am to have in mid-December. Depending on the numbers this returns, and how the urinary incontinence is improving, treatment from here could involve 
1. another scan (if the numbers indicate something is still afoot)
2. Androgen deprivation therapy (ADT)
3. External beam radiation therapy (EBRT)
4. a combination of the above (used successfully in metastatic lymphatic cancers like mine)
5. watchful waiting, i.e. doing nothing and just keeping an eye on things. Should something take an uptick, action will ensue.
7. Without further PSA data, he is reluctant to go ahead to give pelvic EBRT, or initiate ADT, because he doesn't know what he is trying to get rid of, where it is, etc. Also, of course all treatments have side effects, and he is reluctant to risk these without a specific reason.

I asked several questions, three of which were to do with treatment (1-3 below):

1. Question: is your treatment objective to manage and contain the cancers rather than cure them? Answer: Yes, this is the most likely outcome.
2. Question: is a combination of ADT and EBRT appropriate for this cancer? Answer: possibly, but more data is needed.
3. Question: Can EBRT increase the risk of bladder cancer? Answer: yes, but the risk is small.
4. Question: is chemotherapy used in treating prostate cancer? Answer: yes, but only for confirmed PSMA (prostate specific membrance antigen) metastatic disease. Its advantage over other treatments seems to be fairly small. [My reading: he wants to try the other stuff first.]
5. Question: when will the urinary incontinence settle down? Answer: probably after several months. Keep doing the PFM exercises.
6. Question: is there anything wrong with the occasional blood clot in the urine? Answer: No, this is quite normal. Just increase the fluid intake when blood appears.
7. Question: will other specialties (oncologist, radiation oncologist etc.) be brought in if required? Answer: if EBRT is thought to be appropriate, I will be referred to a radiation therapist. However, there is an interdisciplinary round table at Jeremy's practice where difficult cases are discussed among a bunch of different specialists. He thinks mine could benefit from this.

I felt all questions were answered respectfully and without any impatience at my becoming an instant "expert". I look forward to the next time we meet, when he will be sans the moustache he grew for Movember!