Help Needed! Space Oar Gel option

[Boomer75]

Diagnosed at 75 with prostate adenocarcinoma involving 60% of overall specimen in left anterior horn with perineural invasion. Biopsy of left lobe prostatic adenocarcinoma involving 25%of overall specimen with perineural invasion. Concerned about quality of life I am choosing proton beam therapy at Mayo (clinical trial of 25 treatments with concurrent lymph node treatment. Radiologist says that using space Oar gel may miss cancer cells. However some patients in same trial (perhaps with less serious disease) are getting that option. Should I push for that? Or should I just forge ahead with the proton beam and take the possible side effect chances.. PSA 9.98, Gleason 7 3+4, Pirads 5

[Roland632017]

Hi Boomer75

I know you are older than me. But I encourage you to stay positive.

I have some hand exercise going on and I am able and fit at this stage so get your body slowly to adapt to some exercise regime.

Best wishes

[AlanMeyer Moderator]

I hadn't heard of SpaceOAR before. When I looked it up on Google I eventually found the following web page. If I interpret it correctly, there is some benefit to using SpaceOAR with IMRT, and I presume that would apply to proton beam as well.

prostatecancerinfolink.net/...

In my own radiation treatment (HDR brachytherapy + 3DCRT) I did have pretty bad hemorrhoids. I think they were caused by a brutal digital rectal exam by an incompetent urologist, but were then aggravated by the radiation. Long term, I had some rectal scarring, which is apparently common and expected with any radiation treatment. I also had the common urinary side effects (having to urinate more frequently for about 6 months, once an hour at its worst), and sexual side effects (becoming fairly impotent by about 5 years after.)

If it's true that SpaceOAR is truly safe and has very few side effects, and if the treatment will be just as effective, then I think I'd be tempted to try it. The questions are: Is it truly safe? Does it interfere with treatment?

The studies don't seem to report safety issues but it is another medical procedure and it seems to me that it's always possible for something to go wrong.

In theory, proton beam has fewer side effects than x-ray therapy, but it's not clear that patients see a difference. One reason is that the rectal wall is right against the prostate and it's impossible to treat that part of the prostate without hitting the rectal wall as well - whether you're using protons or x-rays, the problem is still the same.

What's bothering me most about all of this is the radiation oncologist's statement that "using SpaceOar gel may miss cancer cells".

Certainly the gel will change the positioning of the prostate and rectum. The rad onc will need to aim the beams a bit differently. Also, with proton beam, I expect it would be essential for the rad onc to compensate for the density of the SpaceOAR gel if the protons will be going through the gel. He'll need to change the settings that control the speed of the protons. If he doesn't know how to do that with SpaceOAR then either you shouldn't use the SpaceOAR gel, or find someone who does know. Be warned, that this might be something that no one has had much experience with. Maybe the rad onc is worried that they'll make mistakes because they have little or no experience with this procedure. If the rad onc is uncomfortable with the procedure, that by itself adds to the risk.

I would imagine that doing this with x-rays is easier than with protons because the x-rays don't require the specific particle acceleration/speed settings that protons require.

Well, I don't know if I've given you any help. The answer I seem to be coming to is: It's hard to say. As with everything else with this damned disease, there could be risks whatever you do. Maybe the information I've given will help in your talk with the rad onc.

One last thing I'll say is that, if you don't get the SpaceOAR gel, you're still likely to do pretty well. Some possibly increased rectal itching and more frequent urination, both abating after a few months, don't need to have a major impact on your quality of life. There are medical treatments for the problems - Preparation H and prescription Flomax helped me.I also kept a jar by the bed to sit up and pee and then go back to sleep. Even with the SpaceOAR, you still may experience some of that. What the gel seems to do is to decrease the severity, or the likelihood, of these effects.

As far as sexual side effects are concerned, the study cited above said that SpaceOAR made no significant difference.

Best of luck.

Alan

[Darryl Partner]

Hi Boomer. Simple reply is that the jury is still out on SpaceOar. They have great marketing and many of my counterparts are seduced. As with most things prostate, time will tell. And, as with most things prostate, there's no appropriate answer, other than the one you will eventually arrive at.

[loman]

Was treated with proton therapy 3 years ago at UF Jacksonville Proton Center and am very satisfied with the outcome.Some early side effects but tolerable. The Space Oar product is being marketed very heavily and if available at the time of my treatment I would have given it a good look. The product seems to be a big advancement and may reduce some side effects. Did you contact any actual users of the product ? Bob

[AlanMeyer Moderator]

Boomer,

Please let us know what you decide to do. If you get the SpaceOAR treatment, maybe you could post a message about what it was like to get it installed, whether you could feel it inside, and whether you noticed any positive or negative effects. Members of the Prostate Cancer Network group would also be interested in reading your experience since there will be men there who are facing the same decision that you are facing.

Thanks and good luck.

Alan

[Boomer75 in reply to AlanMeyer]

First: Doctors make decisions, patients don't. We asked my doctor why I won't get the Space Oar (SO) whereas a close friend (who's also in the clinical trial I am) will get it (already has). Answer: When the cancer is confined to the prostate capsule, the SO can be used because they know where all the cancer is. But mine is not capsule-confined, and the belief is that the SO may "protect" some cancer. Therefore no SO for me, to give them a better chance to irradiate (with PBT) all the cancer.

Second: My friend reported that for the first day with the SO he constantly "felt like he had to go", but after the first day there was no sensation.

Third: My friend had the SO installed Dec 14th, and so far the only negative effect he's had is trying to look nonchalant walking back into the waiting room after the procedure- and failing.

Oh- and the other thing he mentioned was that while spread out on the table like he was about to give birth to quintuplets, he noticed that he was the only man in a room full of women. He thought: "I gotta think about something else..."

Let me take this opportunity too to thank all of you who've contributed your experiences and thoughts about this journey. I am much comforted by the ether-companionship of those who've been down this road, and have not only survived but thrived afterward. I'll add my experiences to the forum as I pass through them, but my next procedure (the "seed planting") isn't until February 28, 2018, at Mayo in Rochester, MN.

Boomer 75

[AlanMeyer Moderator in reply to Boomer75]

Thanks. That's useful info for anyone else considering the SO.

Incidentally, men I know who have had both their prostate and the surrounding tissue treated at a proton beam center only got protons for the prostate itself. The surrounding tissue was treated with conventional x-rays. I would speculate that that is done because the surrounding tissue varies in density and it would be hard to get the proton accelerations right to deposit all the energy in the target region and none in front of or behind it. But that's pure speculation on my part, based on only a layman's knowledge of physics.

Good luck with the procedures.

Alan

[bobdc6]

My doc at Provision Proton (Knoxville) declined to use Space OAR since I had a G 4+5. He opted for the balloon. I'm not sure of the exact technical reason.

Bob

[Jimraz]

Boomer75

I had PC at 72, eight years ago. After much research and personal testimonies I decided to have Proton Beam radiation. I have had zero side effects and my PSA is 0.061 and has been level at that number for five years. I have maintained contact with several men who had the same treatment when I had mine, same result. Medicare paid for all but $25.00! Proton Therapy is worth the time and travel. My best friend had surgery, at the same time, and he is still suffering from numerous side effects and his Cancer is Back. Good luck with your decision

Jim