Scans and genetic testing

[Jscjac]

Also, please provide feedback as to whether we are on the right track to think the first two things we need are : (1) genetic test ( he had Decipher done before his RP/Sept 2017 and (2) the most precise/sophisticated scan available to detect cancer cells. As to the scan(s), he had a couple in July that showed three "suspicious"places. Urologist had additional scan/MRI done and read by an interventional radiologist who said they were NOT bone mets.

[cfrees1]

I may have missed parts of your posts, but at what stage is your husband? PSA? Gleason? When was he diagnosed? What treatments has he received so far? His age?

[Jscjac in reply to cfrees1]

Hi, cfrees1. My husband is 61 and was diagnosed in June (2017), had a RP (robotic) on September 13 (2017). Cancer had escaped the prostate and was found in two of four lymph nodes taken. Gleason 8. Cancer per pathology report was deemed to be Stage 4. Scans were done on July 21 and were clear (no bone mets).

[Jscjac in reply to Jscjac]

Also, he has had one injection of Eligard on Sept 27, our first appointment after the RP. He is scheduled to have the (hormone) injections every four months. And Prolia every eight months.

[vandy69]

Without knowing his current PSA it is difficult to recommend specific scans as some require a minimum level of PSA to be effective. Please provide more details.

Best wishes. Never Give In.

[Jscjac in reply to vandy69]

He has not had PSA checked since RP on Sept. 13 (2017). Urologist said it would be checked when he comes in for his next Eligard injection (January 2018). It was our unsatisfactory visit with him and our reading/research that made us realize we needed to pursue other options immediately.

[vandy69]

If his PSA is high enough, the following scans are the current "gold standard":

1. Axumin PET/CT for soft tissue mets.

2. Sodium Fluoride F-18 PET/CT for bone mets.

He should have monthly blood tests to include PSA, testosterone, and regular CBC.

A Medical Oncologist who specializes in PCa should be managing his care.

Best wishes. Never Give In.

[cfrees1]

Your husband and I are comparable in diagnosis, I'm a bit further down the road than he is. I had surgery in Dec. 2015, and have been on hormone therapy ever since. I had lymph node involvement but not bone mets. My most recent scan was in June 2017. Since he is just in his first appointment or two since surgery, and is now on hormone therapy, and he had a clean bone scan, there isn't much immediate activity required. You will watch the PSA levels and they should bottom out in the next few tests. I get mine checked every three months, but four is perfectly fine too. He could ride the initial hormone treatment for years, with a low PSA. You won't need to worry about another scan until his PSA starts to rise, and even then it needs to rise high enough for the volume of cancer to even show up on a scan. My PSA was rising so we added an oral hormone treatement, bicalutamide about 3 months ago. It's had a positive effect but probably won't last long. My PSA is currently 0.63.

I ask my doctors quite a few questions and we discussed genetic testing. He's not against it at the appropriate time, but in his opinion, current info available can lead to a better understanding for a small percentage of people and even in those cases, it suggests which treatments might not work, but not those that will. So genetic testing at the present time is not the silver bullet we are looking for. His feeling is that immunotherapy is the best hope for long lasting remission or even cure. Right now though, trials are for patients who are much further advanced than your husband or I are.

There have been some recent studies that suggest adding chemotherapy in to the treatment plan earlier might show some benefit. But I think different doctors have different opinions on that. All treatments introduce a level of toxicity to your body. So my doctor, for example, would want to see if the initial hormone therapy works well before upping the level of toxicity. That made sense to me. We'll save chemo until further down the path.

You'll hear lots of conflicting thoughts, and that just suggests the growing amount of attention and study this cancer is getting. That is good. I think the best we can do is learn what we can, make the best decision with the data available to us at the time, and not look back with regret.

Best of luck to your husband. May he get 5 or 7 years out of Eligard. By that time, a completely new set of treatments will be available.

Chuck

[cfrees1]

So he's getting Prolia? I wonder if that is preventative or because of something they saw in the bone scans? My doctor hasn't recommended that for me.

[Jscjac in reply to cfrees1]

Hey cfrees1, the urologist/surgeon said he gives the Prolia injection every eight months as part of the standard protocol because long-term hormone treatment mostly likely leads to osteoporosis. Insurance wouldn't approve until a bone density scan was done. And after it was submitted, they agreed to pay. The bone density scan was completely normal, but yes, I am very anxious to get a more sophistIcated scan that will tell us if there are bone mets. The scans he had in July, before his RP, showed three "suspicious" spots (two ribs and one verabrae), but another scan was done and read by a interventionalist (?) radiologist who said there was no cancer present. I fee very nervous about bone mets.

[cfrees1]

Feeling nervous is understandable. What was his post-RP PSA? If it's under 2, there is little chance that any scans will find anything. I have heard that the Axumin PET might detect as low as 1, but I think if I was only at 1, I would wait. Nothing seems to happen super quickly for us at this stage, and PSA tests every 3 or 4 months is almost always satisfactory. You watch you wait, you react when there is a change, then you watch and wait some more.