What next?

[MotoGuzziFan]

After having RP and salvage radio therapy I was given the all clear last year. Since then my PSA started to increase, doubling every six months, it is now 0.5 and have had a PET scan which showed something on my left rib and smaller areas of concern on shoulder blade and lung. My oncologist has advised waiting till my PSA gets higher, I think he mentioned 10. before any treatment, which he said would be hormone treatment. I only picked up by chance that my PSA had increased, my GP who checked the results never mentioned anything. I am having three monthly blood tests and due to see my oncologist again in April. Does anybody have any advice as to whether this is the right course to take?

[Murk]

Surprised that your Radiation Oncologist was not giving and monitoring with PSA tests every 90 days.

My advice it's time to get another opinion from a Medical Oncologist as well as a different Radiation Oncologist.

[MotoGuzziFan in reply to Murk]

Thank you Murk, I will ask for a second opinion. I was a little concerned by my oncologists lack of any intervention. He did say that I should wait till my PSA gets to 10. But to me that is only going to make things worse?

[Murk in reply to MotoGuzziFan]

I agree and my motto is... When in doubt, move out!

[Tall_Allen]

Discuss these trials with your oncologist now:

prostatecancer.news/2023/05...

prostatecancer.news/2022/09...

[MotoGuzziFan in reply to Tall_Allen]

Thanks Tall Allen, I will send these on and see what happens.

[MotoGuzziFan in reply to MotoGuzziFan]

Hi Tall Allen, I am trying to organise an appointment with my oncologist, the earliest will be next year. He has expressed via email that my current course of treatment is correct in his opinion. Any additional help or advice would be much appreciated as I find dealing with medical professionals a little intimidating and I find it hard to challenge their decisions. Many thanks!

[bagogeo]

def get an opinion on another rad/oncologist.you should of been on meds by now

[MotoGuzziFan in reply to bagogeo]

Thank you for your advice

[Gtine]

Just want to confirm that the current number is .5 and not .05. If it truly is .5 I agree with the other posters - you need another opinion.

[MotoGuzziFan in reply to Gtine]

Hi Gtine, yes it’s .5 and given everyone’s helpful responses I will ask for another opinion. Not always easy in the UK!

[fluffyfur in reply to MotoGuzziFan]

I would be messaging (or calling) them daily. You matter and your health and treatment IS important. Push them forward. Don't be intimidated.

[MotoGuzziFan in reply to fluffyfur]

Thank you fluffyfur for your words of encouragement! I now have an appointment on Jan 9 and will report back.

[NanoMRI]

IMO 'right course' depends on objective. A number of RO's and MO's have questioned/challenged my focus on very low uPSA post RP, salvage RT and especially post ePLND. I ask/challenge them to explain their views/positions. One summation is they see no reason to rush ADT. I on the other had wish/strive to defer ADT/CR for as long as possible, so I take actions much sooner.

[MotoGuzziFan in reply to NanoMRI]

Thank you for replying! Can I ask what actions you take whilst deferring ADT/CR?

[NanoMRI in reply to MotoGuzziFan]

After my unsuccessful salvage RT I was recommended for the Stampede trial here in US (ADT and chemo). Being an otherwise very healthy, fit and active 60, I said no as I did not see this treatment approach as curative. Instead, I reached out to my contacts at the Royal Marsden and Professor Anwar R. Padhani, oncological MRI radiologist in London. I was referred to imaging at Radboud UMC, Nijmegen (a trail at that time). That imaging led to salvage pelvic lymph node surgery with the frozen section pathology method at OLV Hospital, Aalst. That removal of tumor burden, nearly seven years ago, yielded a post ePLND nadir of <0.010, no ADT. Although my uPSA began a slow rise it has been holding very low stable 0.03X range since June 2021, again no ADT. I do keep a very close watch with regular uPSA testing and annualish imaging and liquid blood biopsies. In addition to stepping up my fitness activities, I also did some diet alternations; these are in my bio (Yes, there is no provable evidence these have made any difference. However, I like where I am today so not abandoning for lack of science).

I will disclose I gave up riding (also a MotoGuzzi fan), so this may disqualify my decision making - ? All the best!

[MotoGuzziFan in reply to NanoMRI]

Thank you so much for your full and helpful reply. I was just speaking to a friend who is on their own cancer journey who recommended I ask to be referred to the Royal Marsden for a second opinion. It sounds from your experience that this would be a good idea and will ask at my appointment on Jan 9 to see if this can be actioned. I am 64 and used to be very fit and active, but sadly work and health have seriously impacted on this in the last two years, reading your reply has prompted me to get exercising again. As for my diet I’m a vegan with a taste for red wine and once a biker always a biker!

[NanoMRI in reply to MotoGuzziFan]

I have consulted with Dr van As of Royal Marsden as a private patient since my Dx ten years ago. He was the first to advise me about imaging at 0.03 post RP; well ahead of all guidelines. My most recent PSMA PET and liquid bold biopsy were done this past July, done at 0.033. I learned to no longer give this beast time and obscurity.

Again, can't 'prove it scientifically' that my stepped up physical fitness has made a difference. However, my second data point is my new battle with metastatic melanoma - a liver met. I am through my third doublet immunotherapy treatment with nonminal side effects and imaging after second treatment reflected 50% in tumor size.

Grateful beyond words! Keep on riding!! (I 'just' pedal these days).