Looking for Other Perspectives

[JavaMan]

I lack a lot of the knowledge I see others display on this site and am looking for some input. I was settled on a treatment process but now feel reluctant.

I was Dx'd July of '18 with a Gleason of 7 (3+4), bilateral with perineural invasion. No extraprostatic invasion. Stage 2a. My prostatectomy was in November. The pathology on my prostate said it was negative to cancer in the lymph nodes and margins and expected a clean psa. In January, my PSA was 0.06, in Feb it was 0.09. I have another psa at the end of this week.

The recommended treatment was short term Lupron and radiation to the prostate bed and the lymph nodes. It is my understanding that the radiation is the only hope for a cure, the rest is ongoing treatment. The concern is whether the cancer has spread beyond, possibly to the bone.

My questions: The treatment sounds reasonable but I would like to avoid it if there are reasonable alternatives. I have moderate ED but functional. I am afraid of losing it all together. Is there a rush to start this? Is it reasonable to start radiation to see if it is cured then the hormones?

How bad is it to wait until my psa rises enough to show up on a scan to know exactly where it is? Does knowing that really matter that much?

It appears that if I am not cured, then the future is moving from one med to the next buying time. How much time does all this buy? My wife read that Lupron may extend life only a short number of months. I know we both don't fully understand the context of what we are reading so I am feeling challenged to make a cool headed decision.

What is the likely outcome, and timing, of doing nothing? I appreciate anyone's perspective here on any part!

[FCoffey]

The one question I can answer is "Is there a rush to start this? " No. Prostate cancer is almost never an emergency. You can take weeks or months consider your options, your values, the risks, and make an informed choice. What is right for you has nothing to do with what is right for anyone else.

There is no cure. You will be living with this the rest of your life. You may be one of the lucky men who take the treatment and never see rising PSA again, or not.

Radiation can cause ED and other problems; it tends to show up months later, but isn't all that uncommon.

Take your time, do your research, get at least 3 opinions from different doctors.

Good luck.

[JavaMan in reply to FCoffey]

Thanks FCoffey. And best of luck to you as well!

[Tall_Allen]

Unfortunately, there is certainly a rush to act ASAP. What we know for certain is that men who had salvage radiotherapy (SRT) fared better than those who waited. Waiting until you can detect metastases is a self-fulfilling prophecy and may eliminate the window of opportunity you have for a cure. Your PSA seems to be rising rapidly, so immediate action is warranted.

As to whether you need ADT (Lupron) with your SRT is a judgment call. ADT is not as useful at low PSAs like yours, but the increase seems to be rapid. No, you can't take a "wait and see" approach - ADT sensitizes the cancer to the radiation and cleans up any remaining cancer - it can't be used later as part of a curative therapy if the SRT doesn't work. The same considerations apply to whole pelvic radiation. You only get this one chance at a cure.

I don't know how old you are or if you have other comorbidities, but if your life expectancy is less than 10 years, observation is an acceptable strategy.

[JavaMan in reply to Tall_Allen]

Thanks very much for your comments, Tall Allen. I am 53 and in good health - except for the cancer thing No comorbidities. This is helpful!

[Moespy]

I am 7.5 years in from a very similar situation as yours. I had a prostatectomy and then 3 years later it came back, I then had radiation to the prostate bed which brought me back to undetectable. It is now back and after a PSMA scan we found the recurrence confined to the lymph nodes. I am now scheduled for radiation to the lymph nodes and starting Lupron.

If I had to do it all over again, and from what we have learned in the last 7 years, I would without question have had radiation to the prostate bed and lymph nodes and gone on Lupron shortly after my prostatectomy. I think this would have offered me the best chance for a cure. I think we will see this as standard of care in the very near future.

Note: the radiation did not have any adverse effects on ED or Incontinence for me. I use Cialis for ED and I leak sometimes when I sneeze.

The most important thing to have if you decide to go forward with radiation is a very good and experienced radiologist.

Best wishes!

Jim

[JavaMan in reply to Moespy]

Thanks Moespy! I appreciate your retrospective.

[cujoe]

Java, I would generally concur with the comments from Tall Allen and Moespy re: with post-RP RT, the sooner the better. Also FCoffey's suggestion for second/third opinions is a good one.

Whenever I see someone questioning post-RP radiation therapy, I send them to this (now somewhat outdated) AUA document.

Adjuvant and Salvage Radiotherapy after Prostatectomy: ASTRO/AUA Guideline

auanet.org/guidelines/prost...

And while it sorely needs updating, it does provide a useful framework for thinking about the reasons for considering RT after surgery and the range/magnitude of potential side effects. It was a key for me in making my decision to do adjuvant IMRT as soon as my surgeon and RO would allow it. (FYI, my pathology was lousy, so I had a VERY large "incentive" to do it ASAP.)

Good luck whatever you decide to do - and feel free to ask any additional questions. There are many here who have traveled this road before. Be Well - cujoe

[JavaMan in reply to cujoe]

Thanks Cujoe. I’ll read the link!