PET scan dilemma.

I'm really sorry to read that Carl.  It must give you plenty of turmoil.  Hopefully it will stabilise as it sinks in that the surgeon is offering you a pathway of a scan and it appears the potential for more surgery or radiotherapy.   Waiting is always a trial so let us know when the scan date comes.   I found the Macmillan Nurse very helpful when I had scans as I could ring to get the results before the consultant appointment.

To have a parallel pain will add to it, I had one and was convinced it was something bad but actually it was arthritis.  The Macmillan Nurse also told me I'd think every pain was associated when it's rare it is.

So all the best, keep in touch, Peter

Carl,
Really sorry to hear your news.

However, it is really good they're offering a PET scan before any RT - that often doesn't happen.

Hello Carlos, sorry to hear that the PSA is higher than expected and good luck with the PET scan. As ever please keep us up to date.

My surgery was just before yours but given my Gleason 9 I am expecting recurrence so I appreciate reading more about peoples experiences with different scans.

On the gallbladder front I had my gallbladder removed 15 years ago (I was 40 at the time). I suffered from severe pain, after each meal I had to lie down and sweat it out. Sadly in my case it was misdiagnosed as acid reflux for a long time. The operation was ok so nothing to worry about. The only side affect I have is that fatty foods (which I try to avoid) go straight through me.

I did find an article linking gallbladder disease with PCa when I was searching he internet after my diagnosis:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5325450/

Keep in touch, Richard

I am convinced that being fit helps mitigate effects of RT and most people cope well with it anyway. I was a long time retired before having my RT and I think it is mainly the HT that often precedes and accompanies it that is primarily responsible for among other things general tiredness and early fatigue often experienced. RT does add to this but not seemingly greatly for most men. Men who do heavy manual work are more likely to be more adversely affected than those who have physically less demanding work. Nevertheless a small number of men may be emotionally upset by HT+RT regardless of the work they do. The question is only really answered by an individual when the treatment starts and even then reactions may change over the course of the treatment.

Edited by member 02 Sep 2020 at 00:43  | Reason: missed word

If you're able to arrange your RT for either early morning or late afternoon you should be able to do at least most of a day's work around it. I asked for mine to be at midday to avoid motorway traffic.

Best wishes,

Chris

It's also important to get regular PSA test, Ian gets them every 2 months now.

My experience (search my prior posts). I had Robotic Surgery mid-December 2019. PSA 6 week post-surgery was 0.09. Then three months later, PSA rose to 0.33. That triggered a whole series of tests -- Bone Scan, CT Scan, and PSMA PET Scan. I'm in Canada and am being treated at the top cancer center here. Fortunately, they are a clinical trial for the most sensitive PSMA PET scan (using the F18-DCFPyL radiotracer) -- this is only available at present in the US and Canada as part of clinical trials. In the UK, I believe the most sensitive scan is the Ga68 PSMA PET scan (it's one of the best available, but not quite as sensitive).

The F18-DCFPyL PSMA PET scan I had did not pick up anything (which is more good news than bad news). Since no specific site was pinpointed, I had 6.5 weeks of salvage radiation to the prostate bed area (with targeting based on post-surgery pathology). I was due to see my surgeon, so I had another PSA test only 3.5 weeks after SRT (really too soon - oncologist warned it could be higher, but might as well do another test to get another base point). The PSA result was 0.08, so lower than after surgery.

Here a good article on when salvage radiation is useful: https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/two-studies-help-you-decide-when-to-pursue-radiation-after-surgery

If you do get Salvage Radiation, it may be with Hormone therapy or without. This site is the best site I've found for sharing experiences and learning from others. When I was getting ready for Salvage Radiation, I knew from this site to ask about Hormone Therapy (most here are getting HT with SRT). My oncologist recommended SRT without Hormone Therapy for me, based on my situation. Lynn asked me a question in another conversation, prompting me to into this some more. This article from the Journal of Radiation Oncology explains that it is an oversimplification that all men undergoing SRT should have Hormone Therapy. (two links to same article)

https://www.redjournal.org/article/S0360-3016(18)31032-0/fulltext

https://secure.jbs.elsevierhealth.com/action/getSharedSiteSession?redirect=https%3A%2F%2Fwww.redjournal.org%2Farticle%2FS0360-3016%2818%2931032-0%2Ffulltext&rc=0

The key Q&A from the article which explains why they do not recommended HT with SRT in all cases is:

Question: What do you mean by clinically meaningful endpoints?

Answer: The reason we treat patients is to improve their quantity and/or quality of life. Things that affect these endpoints are clinically meaningful. Things that simply alter a laboratory result, such as the PSA, are not clinical benefits.

Most decent bulletin boards have a symbol to click to post a hyper-link and then you just type it. This one did at one time I seem to recall. Yet it disappeared the same way as the ‘back to top’ button.

I have just discovered the hyper-link button and others on the edit page. Why aren’t they there for the original post? It would take the programmer about five minutes to fix it!

Cheers, John.

Edited by member 04 Sep 2020 at 05:33  | Reason: Not specified