Questions about Active Surveillance as a treatment option

I'm one of those people in the 3+4 limbo area. It is stressful because when I was 3+3, it was easy as AS was the only option. But once I got a new lesion and biopsy report of 3+4, a whole range of options were presented and none of my team members would give a definitive answer but rather spoke of risks and probabilities. For those of us in this realm, I believe a lot of grace is needed, decisions should be based on secondary factors, no one should push one treatment option over another, and treatment decisions should be respected.

I posted something similar in another thread but it seems relevant here. My team said that in most cases, the type of treatment is mainly based on Gleason grade and spread. But for 3+4, there are secondary factor such as genetics, family history, size of lesion, location of lesion, volume of grade 4, cribriform, intraductal, perineural invasion, and number of positive cores that should be considered for deciding on active surveillance or treatment. For me as a 3+4, having several of those factors led me to decide treatment over surveillance. RARP is scheduled for July 18.

@happydappy
Your post is excellent.

The stress and anxiety over a cancer diagnosis is relevant to the individual. So what one person can deal with another cannot. It is the same for which treatment you decide on doing.

It should be your decesion based on your own research, first and second opinions, and then the pros and cons of all. Choosing A.S. maybe exactly right for some and not for others. Same goes for RP versus radiation.

I agree with you 100% about no one should push one treatment option over another and treatment decisions should be respected.

I am reading and watching TV specials on upcoming new treatments for prostate cancer. They seem to be really able to attack the prostate cancer cell only and leave other alone. I think that will really help those in limbo of what to do.

I was lucky and posted many times to have an excellent PCP. He worked with me as a team to go over my two opinions I got on diagnosis and treatments. He shared with me his own research and patient information and research he has been doing with his patients that have been dianosed and treated for prostate cancer.

We went over pros and cons of all. He knows me personally for about 10 years now and not just physically but mentally. So we address my disease both from mental aspect and physical aspect.

Did you decide on a treatment?

Hi, My husband was 3+3 Gleason initially and AS was the recommended action by our health board (who don't have facilities for surgery or radiotherapy, but have to refer you to a neighbouring health board - and thus pay them). 4 biopsies were taken from the identified 'lesion' area, 1 was positive, 2 other biopsies came back positive from the lower half of the one side of the prostate , the other side was clear.

We decided to consult with a surgeon who immediately said he was not a case for AS as the legion was over 10mm (it was 15mm) and on the outer edge of the prostate (this was indeed our initial worry). We decided on a prostatectomy and my husband recovered fantastically so we were devastated at our post op consult to hear it had been upgraded from 3+3 to 4+3 and it was an aggressive Cribriform prostate cancer . The lesion had grown from 15mm to 34mm by time of the op having grown outwards. the 2 other positive biopsies were indeed still low grade. Numerous PETCT PMSA scans, Nuclear bone scans, MRI's, CT scans etc couldn't identify the location of the metastatis for 8 months before it was found in a rib. SABR radiotherapy followed and we are currently waiting to discover the next locations.

My husband had hormone therapy last August (3 month injection) as his PSA rate was rising exponentially. The hormone therapy has had many side affects and he doesn't want to go back on it again quickly, favouring quality of life over quantity. It took him over 8 months to feel it wearing off, but now needs cardio investigations as a result.

In essence we are very pleased he decided for the operation as if we had listened to the AS advice we wouldn't have known the cancer was spreading rapidly as he had no symptoms of prostate cancer at all. It's the pathology post op that has provided all the correct information.
My husband had just turned 65 at the time of the operation. We feel grateful that we at least have our new oncology team on our side being very proactive as opposed to the health board we initially started out with (in UK).

Ultimately the treatment you opt for is a personal choice that only you can make and everyone has different views. We researched everything, but are so pleased we chose to ask a surgeon for advice, otherwise time would have been so much shorter for us by now.

Good luck on your journey.

Hi, My husband was 3+3 Gleason initially and AS was the recommended action by our health board (who don't have facilities for surgery or radiotherapy, but have to refer you to a neighbouring health board - and thus pay them). 4 biopsies were taken from the identified 'lesion' area, 1 was positive, 2 other biopsies came back positive from the lower half of the one side of the prostate , the other side was clear.

We decided to consult with a surgeon who immediately said he was not a case for AS as the legion was over 10mm (it was 15mm) and on the outer edge of the prostate (this was indeed our initial worry). We decided on a prostatectomy and my husband recovered fantastically so we were devastated at our post op consult to hear it had been upgraded from 3+3 to 4+3 and it was an aggressive Cribriform prostate cancer . The lesion had grown from 15mm to 34mm by time of the op having grown outwards. the 2 other positive biopsies were indeed still low grade. Numerous PETCT PMSA scans, Nuclear bone scans, MRI's, CT scans etc couldn't identify the location of the metastatis for 8 months before it was found in a rib. SABR radiotherapy followed and we are currently waiting to discover the next locations.

My husband had hormone therapy last August (3 month injection) as his PSA rate was rising exponentially. The hormone therapy has had many side affects and he doesn't want to go back on it again quickly, favouring quality of life over quantity. It took him over 8 months to feel it wearing off, but now needs cardio investigations as a result.

In essence we are very pleased he decided for the operation as if we had listened to the AS advice we wouldn't have known the cancer was spreading rapidly as he had no symptoms of prostate cancer at all. It's the pathology post op that has provided all the correct information.
My husband had just turned 65 at the time of the operation. We feel grateful that we at least have our new oncology team on our side being very proactive as opposed to the health board we initially started out with (in UK).

Ultimately the treatment you opt for is a personal choice that only you can make and everyone has different views. We researched everything, but are so pleased we chose to ask a surgeon for advice, otherwise time would have been so much shorter for us by now.

Good luck on your journey.

Not sure you know, but the PET scan cannot see metastasis smaller than 2.7 mm and if they’re 5 mm and smaller, they may not be able to be seen. This leaves a lot of people having to wait until their metastasis get bigger to treat them, Or do salvage radiation which works for some people.

Hopefully he is getting PSA tests every three months or so. With a 4+3 you never know, especially with cribriform.

Well, I realize that ADT is not “fun” You could live another decade, or more, by taking the no fun drugs. I’ve had PC for 15 years and I’ve taken ADT for eight of them. The side effects are a hell of a lot better than death.

And if he wants to not be uncomfortable, Then don’t die of prostate cancer. It is extremely painful and for the last month or two you will be unable to actually communicate much, because the drugs for the pain take away ability to Communicate effectively.

Hi Jeff, we didn’t appreciate they cannot see metastatis below 5mm, with PET scans but thanks we will now know for the future.

We do understand that not wanting ADT (currently, he is not ruling it out for the future, but may try a different type), can shorten your life but sometimes quality of life is far better than quantity if that quantity keeps you in abject pain and not capable of doing anything.

We do have personal knowledge of prostate cancer with my father (died with it not of it) and our brother in law lasted for 10 years after being given only 1-4 years, he had every treatment going including many experimental ones. He was late going for a test by which time it was everywhere. He was lucky in that he didn’t have the big side affects of ADT just the minor ones and didn’t have an aggressive prostate cancer. We were with him supporting him throughout his treatment to the very end. Everyone is different and I’ll support my husband with whatever options he chooses, rather than try to make him prolong life if it has no quality for him.

Our oncologist is excellent and he has PSA tests every 6/8 weeks and subsequent scans etc. Thankfully she is fully supportive and often rings randomly to find out how things are etc. We cannot fault her at all.

Good luck with your continuing treatment.

Your husband has another choice besides ADT . The patch trial Completed in England recently and showed that estradiol worked just the same as ADT, but had many fewer side effects. It’s easier on your cardiovascular system, On your bones (osteoporosis), causes fewer hot flashes and less brain fog. If your doctor has not heard of the patch trial, there is a lot of information about it so come back and we can help you.

If his PSA was Rising after treatment, then obviously he still has metastasis that needed to be treated or they could grow further. Your getting them treated by having them zapped with SBRT is a great solution. Dr. Mark Scholz, who you can see on PCRI videos, feels that doing that, is the best way to treat the type of prostate cancer reoccurrences you apparently have. Best of luck.