DID ANYONE HAVE SIDE EFFECTS WITH SBRT? (ED -URINARY - RECTAL PROBLEMS?)

[JWS13]

I am Having SBRT at UCLA with Spaceoar...

Anyone have any ED, Rectal, or Urinary Side effects with their SBRT ?

Thanks in advance for all replies..

[Jpl506]

Same treatment, same place sans SpaceOar. No side effects.

[Tall_Allen]

I was treated with SBRT at UCLA in 2010. All side effects were transient. Here is what you can expect (SpaceOAR makes no difference in acute side effects and is worthless IMO):

prostatecancer.news/2018/10...

[JWS13 in reply to Tall_Allen]

you had CT Planning if it was 2010 not MRI planning back then? correct? I can't have an MRI have a defibrillator, Kishan from UCLA says that increases my urinary, bowel and ED risk by 5%? If I went to Rossi at California Protons, would I avoid the 5% extra risk by using Proton therapy instead of photon therapy in that it saves healthy tissue or do I risk more doing it at not as major of a center as UCLA?

[Tall_Allen in reply to JWS13]

No, I had both CT and MRI - fused images, but planning can be done with CT only. What spares healthy tissue is scrupulous planning, as Dr Kishan does. There is no evidence that proton spares healthy tissue, in spite of their unsubstantiated claims.

[Gabby643 in reply to Tall_Allen]

thanks T A

[BL2023 in reply to Tall_Allen]

After a consultation with Dr. Kishan for Viewray Sbrt, he recommended spaceoar. I’m G7 (4+3), 63 yes old, athletic, recent decipher score of .26 low risk. Why, in your opinion, is spaceoar worthless and what are you basing it on? Thanks.

[Tall_Allen in reply to BL2023]

Did you read the link I provided?

In fact, in Kishan's Mirage trial he found no better results in those who had SpaceOAR with Viewray vs those who didn't. Ask him.

But maybe because you are very lean, he might think you would benefit? Fat surrounding organs provide natural spacing.

[BL2023 in reply to Tall_Allen]

Thanks for the reply. I did go to the link you provided and it was a general summary of what to expect after RT. I'd like to see the link that refers to spaceoar. I have Kaiser and they said the risks outweigh the benefits. As I've gone through this education process since Dx on Jan 24, 2023, I initially saw the benefit of the spacer, though some of the men on here seem to have some bad experiences and I'd rather avoid any invasive procedures because of those risks.

I asked Dr. Kishan and I posed the usual, "If it was you/your dad/etc., would you choose spaceoar?" and he said he would. I didn't ask him directly about the mirage trial findings of with/without spaceoar results.

[Tall_Allen in reply to BL2023]

My bad- I meant to link this.

prostatecancer.news/2017/01...

But I've since moderated my views somewhat - I still think it's a cure in search of a disease, but there are situations that may be improved by it.

As for your question - I'm rolling my eyes - if every doctor had a dollar for everytime he was asked that, he could afford a new car. Even my parents asked it. I hope you understand why it's a silly question- how would the doctor know what it's like to be you? IMO, doctors should never answer that - it is just a way for the patient to deflect responsibility for his decision. If you can't answer for yourself, you probably haven't understood the benefits and risks.

[BL2023 in reply to Tall_Allen]

As a prosecutor who's asked a similar style question to hundreds of potential jurors over thirty two years, I consider that question another piece of information; not only the substantive answer but the tone and body language that accompanies the answer. But I get your point.

Thanks for the link and the reply. Appreciate it.

[Tall_Allen in reply to BL2023]

The more experienced doctors learn to say, "What information can I give you, so that you have the information you need to make the decision that's right for you?" The subtext of patients (like yourself and my parents) who asked that is,"You are the expert, so I will do whatever you tell me." That is giving up your power.

You are fully capable of understanding everything your doctor knows on the subject, and deciding whether it is right for YOU. The doctor has his own set of biases, which are different from yours. What he would do for himself (or his father) may be entirely different from what you would do for yourself, given having the same information. He is not trying to keep anything from you - this is not a court - he is on your side.

You had no problem asking me for more info-- why didn't you ask him? Ask him about how patients did without SpaceOAR on the Mirage trial. Ask him if your lack of visceral fat is factor. These are much better questions, Oedipus aside 😆, than asking how he would treat his father.

Don't give up your power.

[BL2023 in reply to Tall_Allen]

Oy vey…

Yeah, I’m not your parents, nor have I given up my “power”. You’ve assumed a fact not in evidence that I didn’t ask Dr. Kishan additional questions for the hour or so I spent with him. Thanks for your input.

[Tall_Allen in reply to BL2023]

I assure you, he wasn't hiding anything from you - he's not that kind of guy. It is your decision, and it doesn't matter one bit what he would tell his father.

And I know you aren't my parents. I've been along with patients on dozens of doctor visits, and they always ask 'the question." Did you imagine you discovered it, or that it makes the doctor reveal what he really thinks?

[BL2023 in reply to Tall_Allen]

Are you still on about this? Dear lord. When I first got on this site, your posts immediately struck me as being arrogant and bullying. Fortunately, everyone else has been kind, supportive, incredibly open about their experiences, talking to me about the most intimate details of their life.

And then there’s you.

Is this how you want to waste your time? Doing a social media debate over “the question “, something you deem a sign of weakness? What’s your goal here? What do you get out of this? Some sense of superiority? It’s odd for a man who deems himself an advocate to be so dismissive and snarky to guys going through something so difficult.

As for his answer, do you think he’d lie about that? Asking an expert what he or she would do in similar circumstances is completely logical and one more bit of info to help someone, in this case me, decide what would be the best treatment option. So what do you care how I go about that?

That’s a rhetorical question. I really don’t care for a response from you.

[Tall_Allen in reply to BL2023]

My goal is to empower patients. Empowerment means capable of making one's own decisions.

[BL2023 in reply to Tall_Allen]

Belittling someone to empower them is an odd approach. I’m sure you mean well. Stay healthy.

[Tall_Allen in reply to BL2023]

When someone points out a misstep you made, it doesn't have to be taken as a critique of you as a person.

[TFU589 in reply to BL2023]

Hmm, was in to see Dr. K a few weeks ago, SBRT consult, received the "yes, if it was me, I would get SpaceOAR-ed".

[TFU589 in reply to Tall_Allen]

I took a look at the research doc, and was trying to figure out where or how you saw the difference between those who had SpaceOAR and did not have SpaceOAR in the MRI Arm. I can see that 37 out of the 47 MRI arm had SpaceOAR (Table 1.), but don't see an actual difference cited.

Possible I am missing it, out of printer ink, usually print em out and I can put my cognitive helper (pencil and marker) to work.

Let me/us know where or how you found/know this?

I am the author/instigator of a similar SpaceOAR thread..."greater than 50% positive cores".

MIRAGE article: can get full PDF if anyone prefers.

jamanetwork.com/journals/ja...

[Tall_Allen in reply to TFU589]

Kishan told me.

[Yearofthecow]

I had viewray SBRT at UCLA with space oar. Only immediate side effect was some urinary retention that was immediately solved with Tamsulosin(flomax) within 24 hours.

Two weeks after treatment I feel as I did before treatment

[JWS13 in reply to Yearofthecow]

did you have CT Planning or MRI planning? I can't have an MRI have a defibrillator, Kishan from UCLA says that increases my urinary, bowel and ED risk by 5%? If I went to Rossi at California Protons, would I avoid the 5% extra risk by using Proton therapy instead of photon therapy in that it saves healthy tissue or do I risk more doing it at not as major of a center as UCLA?

[maley2711]

I doubt there is any tpe of prostate radiation which is free of any possibility of such side effects? Ask the provider you are considering. Google and pubmed.com may help you find actual data. TA here may have posted some studies on that topic?

[paladin7]

I had SBRT in the spring of 2020. In February of 2021, I began to have rectal bleeding. Steroids controlled this for a while, but I ended up hospitalized last March due to extremely low blood count. Had Argon plasma coagulation performed while at the hospital, and things are slowly getting better.

[MMoops]

Had no side effects and am now three years past. Had the spacer with no ill effects, as well.

[JWS13 in reply to MMoops]

where did you have your sbrt and spaceoar done?

[MMoops in reply to JWS13]

Surgery in MSK, Manhattan. Radiation in MSK, West Harrison.

[jazzy53]

Are you getting ADT alongside radiation? If so, the ADT would almost certainly cause ED for the duration of your treatment -- in my case, 2 years plus several months more as the hormonal med (Zoladex) slowly left my system.

[JWS13 in reply to jazzy53]

How bad were the side effects of adt...taking it for 4 months.tx

[cesces]

"SpaceOAR makes no difference in acute side effects and is worthless IMO"

I have heard the same thing