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Surgery or Proton therapy? What do you think?

SantaZia
Posts: 64
Joined: Apr 2018

Looking for best treatment option surgery or proton therapy, so far I have completed one consult with a radiation oncologist who suggested I start hormone treatment that day.  I didn’t think this was the best idea since I had other consults with two University based cancer centers scheduled.  MD Anderson Proton Center has scheduled an MRI and Bone Scan. I will also consult with an experienced and high volume surgeon there and at the UNM Cancer center.  I am 68 with a neurogenic bladder.  I had a diagnosis of prostate cancer in Feb. 2018 (PSA 13.67 & 13.20.  A biopsy on 2.13.18 one left, 3+3 =6 -5% left and two 3+4=7 -30% right. No PSA from 2012 to 2018 -2012 was 2.05.     I am a runner in good health with active sex life, although erections are not as hard as they once were. I have been unable to empty my bladder completely (50%) without catheter since mid-40’s bladder due to L4-5 disk disease. The bladder has been described as big and floppy but healthy after annual cystoscopies. TURP in 2003 improved stream, but continued urine retention. I started intermittent catheterization in 2002 6 times a day with higher frequency at night.  After the TURP have had annual cystoscopy which had required a couple of times that the Urologist open the bladder neck with stretching device.  I believe the bladder neck contracture and scar tissue has formed at the junction of the bladder outlet due to the TURP and long term catheter use.  I have been told that my condition may complicate treatment and increase odds of incontinence.

Clevelandguy
Posts: 426
Joined: Jun 2015

Hi,

I would do more consults and tests with your doctors.  What do they recommend? For radiation Proton seems a good choice since the beam stops at the intended spot, no exit damage. Do the doctors think surgery will remove all the cancer?

Dave 3+4

SantaZia
Posts: 64
Joined: Apr 2018

Well I have my first consult with a surgeon at UNM Cancer Center tomorrow.  I have MRI and Bone Scan scheudled with MD Anderson. I am going to ask if UNM can provide the tests sooner. Thanks!

Old Salt
Posts: 720
Joined: Aug 2014

If you are looking into proton radiation, you should also talk to other radiation oncologists, such as ones that specialize in brachytherapy (there is a low dose ('seeds') and a high-dose variety) and Stereotactic Body Radiation Therapy (SBRT). Proton therapy has not been proven to be better in general, but each case is different. Could be the best for you from the radiation alternatives.  Just remember, most, but not all, specialists tend to push their own craft.

Whatever, MD Anderson is an excellent place to get advice. 

SantaZia
Posts: 64
Joined: Apr 2018

Thanks I will bring that up.  I thought that looked like a good option too.  

Dino_F's picture
Dino_F
Posts: 12
Joined: Mar 2018

SantaZia,

I can relate to several of your issues, but in a different sequence.  I chose proton radiation at U of Pennsylvania over surgery in 2012. My gleason was 3+3 but my 2012 biopsy had 1/3 more positive cores than my 2011 biopsy, so it was time to act.  Halfway through my 44 proton radiation treatments I developed severe urinary retention (details are on my blog).  I needed to have a Foley catheter in place for the remainder of my treatments.  At that time I was the first of 240 prostate cancer proton treatment patients at Penn who had developed this condition.  My radiation oncologist said it was likely due to a higher than avaerage  degree of prostate inflammation. Once I finished my treatments it took 4 more weeks before I regained flow without catheterization.  My PSA dropped from 4.8 before treatment to 0.7 afterwards.  But my PSA continued to creep upward and doubled between 2016 and 2017.  My gleason was now 4+5.  My local urologist steered me to Memorial Sloan Kettering Cancer Center in NYC where there were surgeons skilled in doing salvage radical prostatectomies on patients like me who had failed radiation therapy.  The surgery was complex because of all the scar tissue left behind from my previous radiation, but ultimately successful.  The anastamosis where the urethra was reconnected to the bladder neck took over 9 weeks to heal...a record for my surgeon.  Two and a half months after my catheter was finally removed I needed emergency dilation because of a bladder neck contracture. I had a Foley catheter for 7 weeks. I eventually had a TUIBNC procedure during which the surgeon applied 1 cc of mitomycin to each of the 4 incisions he made.  The intent of the procedure was to open up my urethra and prevent scar tissue from forming again at the bladder neck.  The trade off was that instead of having repeated urinary retention problems I will be incontinent for the rest of my life.  The possibility of an artificial urinary sphincter may be a solution, but I have complications which might rule me out as a candidate.

I'm sorry for being long-winded, but, like you, I am a complex case.  MD Anderson is the #1 cancer center in the US and you will be in excellent hands regardless of which treatment option you select.  Be aware that if your treatment fails, as mine did, salvage radiation or a salvage prostatectomy at a top center exist as reasonable options.  Eight months after my salvage surgery my PSA is in the "undetectable" range.

Good luck with your difficult decision and treatment.  Let us know how you do.

Dino

 

SantaZia
Posts: 64
Joined: Apr 2018

Hi Dino.  I am sorry for all the stuff you have endured.  I missed your reply to my posting. I am trying to determine if Proton treatment will work for me and your information really helps. Your detailed response is just what I was needing to know.  I have known for years about the poor success rates of the TUIBNC incisions and luckily have avoided that. I have had the bladder neck dilatations to be able to keep my 6 times a day catherization going.   I have done this since 2000 and if part of my life style.  I am committed to AS but that could change anyday. I will discuss these issues with the MD Anderson Proton folks later this month.  I would love to follow your blog as I could face your issues at some point in the future. Please let me know how to find it. Thank you for your insights! Best to you. Andy

 

Grinder
Posts: 437
Joined: Mar 2017

Dino... please don't feel like you are being "long-winded". Every detail you can provide is important for everyone here to gain as much information from each other's experiences. That's why we read and write posts on here.

If you can think of any other details, please feel free to post them. And if anybody is long-winded, its me. If you see my posts, they are 8-10 paragraphs long and say half as much as you said.

And I sympathize with your catheter experience. I've had then in and out many times, but never as long as 7 weeks at one time. :O

Hang in there, buddy.

Melvin10
Posts: 3
Joined: Sep 2018

Something they never tell you is that after radiation failure, the recurrent cancer is more aggressive.

 

Old Salt
Posts: 720
Joined: Aug 2014

Please provide some (science-based) evidence for that statement.

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Melvin,

I cannot find any comment in the article pointed out by you above that substantiates your previous assertion on "...  after radiation failure, the recurrent cancer is more aggressive ...". What I read is that they found more Gleason 8 to 10 cases in radiotherapy failure than other scores. Such doesn't surprise me because when comparing with the number of patients doing radiation, those with high Gleason scores are the cases often recommended to RT. They outnumber the cases with lower scores.

I believe many of us are interested in the theme. Can you provide details?

Best,

VG

Old Salt
Posts: 720
Joined: Aug 2014

I also read the 2002 (!) paper in Reviews of Urology and agree that there is no good support in that review for the statement that recurrent cancer after radiotherapy is more aggressive. The authors refer to an even older paper (Sander et al; reference 3), but the latter paper is barely related to the topic that we are discussing. Here is the conclusion from the Sander et al paper:

 

Overall survival after conformal radiotherapy for prostate cancer remains high 5 years after biochemical failure. This high survival rate occurs even though the group of patients with biochemical failure has worse than average adverse preradiation prognostic factors. Thus, although biochemical failure can identify patients who have recurrent disease after RT, the ultimate relationship between this endpoint and death remains to be better defined.

And this is the abstract from the 2002 review:

Radioresistant or recurrent prostate cancer represents a serious health risk for approximately 20%–30% of patients treated with primary radiation therapy for clinically localized prostate cancer. The majority of patients exhibit large volume and poorly differentiated disease at the time of diagnosis, which limits the ability of salvage therapy to eradicate the cancer. Early detection with serum PSA monitoring and prostate needle biopsy following primary radiation therapy may identify residual adenocarcinoma at an earlier stage and increase the likelihood of successful salvage therapy. Radical prostatectomy, prostate cryoablation, and brachytherapy comprise the options for salvage treatment available for radiorecurrent prostate cancer. The goal of disease eradication must be balanced against the potential for serious treatment-related side effects. As a result, many patients receive noncurative therapy with androgen ablation despite the real risk of disease progression and mortality.

More in general, this discussion is of academic (?) interest only because SantaZia made his decision on therapy quite some time ago.

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