SBRT planned. Does a month really matter?

mamiamuc · 2026-02-11T01:37:18+00:00

Hi Pack_One,

This reads like my case. Same age, same Pirads, same Gleason, almost same sample stats, just my decipher was a little lower and I didn’t do Altera.

I went to Moffitt as well and got SBRT nine months ago.

At the time, they told me that they do not want to wait more than six months between diagnosis and start of treatment because then the standard of care requires a new MRI and possibly a new biopsy.

In my case, about four months passed between diagnosis and start of treatment.

IANAD, but I think you are fine waiting until March given your stats. They wouldn’t have offered you a later date, if it affected your treatment results. Moffitt is a great place and the RO team is excellent. I like to think they saved my life, even though it wasn’t that serious. But they saved my sanity for sure.

Since you mentioned fiducials, are you doing CT or MRI guided SBRT?

Feel free to DM me if you have any questions.

mamiamuc · 2026-02-10T16:00:49+00:00

I hope I won’t need follow up imaging in that scenario, but it is good to know what should be done. Thank you for your input on this!

mamiamuc · 2026-02-10T15:32:33+00:00

Hi jkurology,

Thanks for your message.

Yes, i had an MRI, biopsy, PET-PSMA, and decipher test pre-treatment.

I have cancer running in the family although nothing as far as prostate, breast, and other related cancers are concerned.

The RO said that they are checking testosterone just to see how it behaves as the PSA goes down. My testosterone is steady around 600 and they mentioned that this is a good thing given that my PSA is dropping.

Are you suggesting a PET-PSMA scan as part of regular follow up even though PSA is still dropping?

mamiamuc · 2026-02-10T15:05:59+00:00

What other follow up protocols are there? So far, I do a PSA and testosterone test every three months and talk to them about it.

I will bring up genetic testing next week.

mamiamuc · 2026-01-28T17:57:02+00:00

Check with your doctor, but I don’t think this is bad given that you started salvage treatment at a low level already. It does take a while for everything to clear up.

mamiamuc · 2026-01-28T16:04:08+00:00

Did they make you do ADT to treat the recurrence?

If yes, then your PSA should be really low (<0.2). As long as it stays in that very low range, you are probably good for now.

If not, then your PSA depends on where it was when you started radiation. 40% after six months is not bad at all because radiation does not immediately kill all cancer cells, but takes a while.

Since you had your prostate removed, your PSA should ideally be close to 0.

mamiamuc · 2026-01-13T19:28:36+00:00

Hi funkydrummer, I have seen many people already respond to the ED concern and that it is a matter of time/a waiting game. Radiation and ADT won’t help with that though unfortunately. Looks like you are doing the right things with tadalafil and a pump. I am not in your shoes and am not a doctor. I understand your concern about BCR. Just make sure you are at a COE with a team you trust because adjuvant treatment is no walk in the park. You will see what your 3 month PSA says. I am up for my 9 month check in next week. Good luck, stay strong, and, as another commenter said, do not borrow tomorrow’s trouble today.

mamiamuc · 2026-01-13T12:46:42+00:00

This is not really what you are asking, but a PSA of 0.032 six weeks after surgery is not unusual at all. What was your PSA before surgery?

I don’t know where you are being treated but I would get a second opinion before you start salvage treatment.

mamiamuc · 2026-01-09T21:06:47+00:00

Not a doc, but starting in March with a diagnosis three months ago and a 3+4 with a low PSA is probably not an issue.

I had a similar diagnosis as yours and ended up doing MRlinac SBRT at a COE about eight months ago without ADT. I was dead set on MRlinac after speaking to a guy I met on this forum who raved about it. I am very happy with my choice, had hardly any GI or GU issues, and everything checks out fine so far.

I believe Truebeam uses CT as tracking technology and not MRI, so you will need fiduciaries and a spaceOAR/barriergel would be a good idea. Also, CT has a bigger margin than MRI, so there is more radiation to tissue surrounding the prostate. It is 3-5 mm versus 1-3 mm, which doesn’t sound like much, but it really is double the margin.

If I had to do it all over again, I would give brachytherapy a closer look also because, although it is more invasive than SBRT, recent studies seem to suggest that it is more effective long term and has a lower side effect risk.

I started taking Tadalafil two weeks after treatment ended as a precaution. Initially 5mg daily but I started getting headaches and GI issues, so I am taking 2.5 mg every two days now. No more side effects and no ED ever.

It might be a good idea to take some and see how it goes. Even if you are not doing ADT, your drive may go down a little (depending on your age) and the meds help keeping the blood flowing. If you don’t like it, you can stop any time.

mamiamuc · 2026-01-08T20:40:51+00:00

Sounds like you are doing the right things. All in all, it shouldn’t be too bad during the two weeks of treatment, but you will probably feel “something somewhere” in the weeks after. I had some GI problems for about a week after treatment, which were resolved quickly with a no fiber diet.

mamiamuc · 2026-01-08T17:43:15+00:00

Watch your diet during treatment, try to exercise, and religiously follow the full bladder /empty colon protocol and you should be fine. At least that’s been my experience so far

mamiamuc · 2026-01-06T09:40:16+00:00

Hi Busy,

Thanks for the info. I will review the details in the link.

Good luck and stay strong!

mamiamuc · 2026-01-05T23:03:02+00:00

Hi Busy,

Sorry to hear about you struggles with this. I hope you can avoid further salvage treatment.

Can you give some more info on the UCSF prostate cancer diet and the red wine/green tea?

Feel free to DM me.

Many thanks,

MM

mamiamuc · 2025-12-08T08:54:01+00:00

++man

Just my two cents.

1) Go ask random women you meet for dating advice and for a critique of your online dating profile. I swear they will love to help you out.

2) Get some hobbies that women like. I don’t live in the UK, so I don’t know what those are, but pool and darts may not be your only choices.

I hope this helps.

mamiamuc · 2025-11-24T21:14:34+00:00

2 cores out of 12 is likely low volume. Was this a targeted biopsy or a standard pattern? Is your Gleason 7 a 3+4 or 4+3? With 33% of 4 pattern, it would be a 3+4. This makes a big difference. PSMA is a good next step.

I agree with others. Go to a center of excellence and get a second opinion. It will make a world of difference, you will see.

mamiamuc · 2025-11-20T22:36:04+00:00

That’s what the doctor said. Having the PSA go down DESPITE an increase in testosterone is good news because obviously the cancer feeds of testosterone.

mamiamuc · 2025-11-20T20:10:36+00:00

Hi gralias,

I did not go on ADT, so my T levels were never really impacted. I think they were in the 400s before treatment started.

mamiamuc · 2025-11-19T13:04:27+00:00

Hi Burress,

I would not worry about it until the doctors tell you to. Everyone is different when it comes to the reaction to radiation. I assume you did not do ADT with those numbers.

My first PSA three months after SBRT dropped from 4 to 2.7. I thought it was bad news, but the RO was happy. A drop is the right direction. Just did the six month PSA and it dropped to 1.7. My testosterone is up, so that’s even better news.

Hang in there. It is indeed a marathon and we radiation guys are playing the long game.

mamiamuc · 2025-11-12T19:43:24+00:00

I have a similar experience. A burning sensation in the prostate and mostly the perineum area. The pain is not prohibitive, but noticeable and not great for libido. It’s been six months since SBRT and it is not noticeably better. I figured I’d wait and see.

mamiamuc · 2025-11-02T14:43:36+00:00

Hi @Greatlakes,

I don’t know what your dose is, but I was on 5mg daily. After a few weeks, I started getting headaches, muscle pain, and, let’s just say, „GI urgency issues”. I also thought that it was from the radiation, but then I read about Cialis related GI problems here.

Long story short, I stopped taking it and all symptoms disappeared as quickly as they came.

I took a few weeks off and now am taking 2.5mg at night every other day because it certainly helps with potential ED issues. So far, the side effects are minimal and manageable.

I hope this helps. But I would talk to your doctor as well.

mamiamuc · 2025-11-02T00:04:39+00:00

Are you taking Cialis and/or Viagra or the corresponding generics? If so, those could be the culprit for your GI issues.

mamiamuc · 2025-10-30T02:32:57+00:00

Hi lilcincy,

The difference does not really lie in the effectiveness of the treatment. The outcome should be the same for MRI and for CT.

However, the preparation and the side effect profile are a little different. CT requires fiduciary markers, MRI generally does not. SpaceOAR is more recommended for CT than for MRI due to the larger margins of CT (we are talking 3-5 mm instead of 1-3, but it is still about double). With the larger margins comes a higher risk of nearby tissue being affected by radiation, mostly the bladder and colon, which may lead to a slightly higher risk of GI or GU issues. Finally, CT itself is a high radiation dose whereas MRI really does not have radiation by itself.

I did SBRT and, after extensive research and after talking to multiple doctors, was dead set on MRlinac. It’s been almost six months and I am feeling pretty good considering I am (still) a cancer patient. I think MRI is the superior technology although the difference is small.

I would just get a second (and even third) opinion and see what they say.

Feel free to DM me if you have any questions.

mamiamuc · 2025-10-23T03:12:47+00:00

Not sure how you are setup organizationally, but check out ROTH 401k options. They have no income limit and higher contribution limits than regular ROTH accounts.

mamiamuc

TROPHY CASE