Prostate removal after radiation??

[NIKKIWOOD]

Since diagnosis (2016) I've had chemo (taxotere), 25 radiation sessions on my prostate, along with regular shots of ADT (Eligard). I currently have a PSA of .7

I recently had a PSMA scan, and the only cancer in my body at this point is in the prostate gland itself. The scans were sent to my urologist (by my oncologist), who I have every reason to believe is a first rate surgeon.

He reviewed my scans and advised me not to have surgery, since apparently, trying to remove my prostate at this point (after radiation) could produce any number of really nasty side effects.

I am inclined to get a second opinion on surgery, but I am writing now to ask if anyone else has had surgery to remove a prostate that has been radiated, and what your results have been.

Many thanks.

[Tall_Allen]

Don't do it!!!! Even if you can find a surgeon willing to take the risk (there are a lot of hot dog surgeons out there), the likely damage is a lifetime of horrors for you. There are plenty of salvage therapies that do not involve surgery.

prostatecancer.news/2017/09...

[NIKKIWOOD in reply to Tall_Allen]

T_A --- Thanks. I am well aware of the "hot dog" syndrome among surgeons, but with one opinion in hand (from a very good surgeon), I thought it made sense to get at least one other opinion from another surgeon. But -- having read through the info in the link you provided, I think that would be a waste of time.

So now I have to wrap my weary brain around the info in the article you sent; but for me, it's like trying to read something in Greek.

[Tall_Allen in reply to NIKKIWOOD]

I think the table at the end is pretty clear. I'm open to questions, but suggest you sit down with an experienced RO. Where are you located?

[NIKKIWOOD in reply to Tall_Allen]

I'm in MN --- 10 minutes from the UofM (and their considerable cancer capability) and 85 miles from Mayo.

[NIKKIWOOD in reply to Tall_Allen]

I've now spent a couple of hours poring over your link, and some light is begging to show through. I will keep "pounding " it.

BTW, having spent half my career in academic publishing, it occurs to me that you would be a perfect candidate to author a primer for prostate cancer patients. Not as regular book, though, (marketing is too expensive and complicated), but rather a piece that could be sold to oncology/urology practices, who in turn would provide it to newly diagnosed prostate cancer patients.

[Tall_Allen in reply to NIKKIWOOD]

Thanks, NIKKIWOOD. The problem with books on medical stuff is that they are out of date by the time they are published. On several of my online articles, I just update the info as new data emerges. In fact, looking at that article, I see I should update it with a mention that the combination of mpMRI and PSMA PET/CT and biopsy should be used to locate recurrences.

I'm impressed by the oncology department at UofM - particularly Emmanuel Antonarakis and Charles Ryan (who is also the CEO of the Prostate Cancer Foundation). I don't know any top ROs there, however.

You can get free and excellent treatment if you are accepted into the following trial of salvage SBRT (5 treatments) at NIH in Bethesda, MD. They pick up all costs including transportation and PSMA PET imaging, they have state-of-the-art equipment and some of the best doctors anywhere. Call Deborah E Citrin, M.D. [phone] [e-mail]

clinicaltrials.gov/ct2/show...

[NIKKIWOOD in reply to Tall_Allen]

T_A -- That would be the wrong kind of book for a new prostate patient. I think we need a fairly straight -forward presentation of what one is up against as a new patient -- not a summary of all the research that has been done in the recent past. Think Susan Love's book on breast cancer-- which was a godsend for my wife (and me) 20 odd years ago when she was diagnozed with breast cancer.. Reading that book helped both of us ask better questions of the treating personnel.

[Tall_Allen in reply to NIKKIWOOD]

I had newly diagnosed patients in mind when I wrote a few articles, such as these:

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

prostatecancer.news/2017/10...

[dadzone43 in reply to NIKKIWOOD]

go in peace

[tango65]

You can do salvage therapy with brachytherapy and SBRT. Consult with a RO.

[NIKKIWOOD in reply to tango65]

I had a wonderful RO when I first started this journey, but he has since retired. Any tips on how I can recognize a skilled RO who actually knows what he/she is doing?

[ARIES29]

I was also told not to have the prostate removed after radiation because of scar tissue left from the radiation. If I was told that before the radiation I would have it removed as now it has spread to lymph nodes.

[NIKKIWOOD in reply to ARIES29]

I was thinking the same thing; but then I remembered the cancer (when first diagnosed) was already in some of my lymph nodes, so surgery was ruled out at that point (2016).

[TWTJr]

Read Tall Allen's post again. Don't do it. I did, and the complications were severe. The urethral anastamosis would not heal, and after 3 months, and multiple hyperbaric sessions, it finally healed. Had a Foley for about 4 months. Marked incontinence due to the radiation effects. Multiple urethral strictures, requiring emergency dilation and cath placement over a number of years. Had the best surgeon in Houston. Did not matter.

Read Tall Allen's post again. Don't do it.

[NIKKIWOOD in reply to TWTJr]

I am already convinced (to not let them do surgery) -- all the more so after hearing your story.

Were you recommended for surgery by your oncologist, as I was? I am frankly shocked they (oncologists) don't know better .......

[TWTJr in reply to NIKKIWOOD]

Yes, it was recommended, but the extreme complications were not spoken of. However, that was 21 years ago, and while I would today choose a different treatment alternative, at the time the alternatives were far fewer. I am alive, but have existed with a markedly different lifestyle, and always carry a small piece of luggage with needed items for sudden urethral blockage and other urologic emergencies. All related to the salvage prostatectomy.

[NIKKIWOOD in reply to TWTJr]

Same here.......... I've been with this particular oncologist since 2016, and heretofore, was always confident he knew what he was doing. Now that I have learned about the probable consequences of surgery, I am no longer quite so sure.

This experience raises troubling question about how a patient with no medical background (e.g. me) can navigate the cancer establishment while getting this kind of bonehead counsel.

[maley2711 in reply to NIKKIWOOD]

That is the million dollar question....HOW ???????????

[TWTJr in reply to NIKKIWOOD]

Get multiple consultations, and most important, educate yourself. It takes work.

[NIKKIWOOD in reply to TWTJr]

Getting other opinions is easy enough, but reading the data , as contained in a number of comments included here is the problem. I'm a history major, and I've not had any kind of science course since college...................

[cancerfox in reply to NIKKIWOOD]

That is why websites like this one are helpful in educating people about their options and what other people have experienced. And if you think you are getting suspect medical advice, get another opinion elsewhere like TWTJr advises. 🦊

[Hidden]

Don’t do it! Unless you want to wear diapers for the rest of your life…….

[Deadstick]

NIKKIWOOD,

I had primary radiation as well. After my recurrence, my Uro has said pretty much what others have said. Surgery would be a bad idea for me. My Uro has also told me not to attempt cryo due to my age and the almost certain Grade 2-3 SE's. He said I might be able to get low fraction SBRT but added that there was no long term data about effective oncological control or SE's in a re-irradiation setting. After a Pylarify scan, my recurrence appears to be at the primary site and at the base of the left SV. Still on ADT....

[anonymoose2]

My radiologist told me after the fact that surgery was out of the question. These doctors have a tendency to not tell you all the ins and outs. And we are held to blame because we didn’t ask the questions as if we are smarter than them. So welcome to the fried and scared prostate that still shows cancer club. 😡

[Gmailer]

I had surgery 3 1/2 years ago. Never had radiation which it seems makes it more difficult. I had dendritic cell treatments in Delhi, India 6 years ago that took it out of my bone back then. I'm doing pretty good, but I have to work out or I feel terrible. My surgeon was the Indian and Asian president years ago. He was good, but the unit doesn't work the way it should. PSA was 212 in August, 2014. Peeing my pants was never an issue. Two times I peed in the diaper and that was it. Very lucky.

My PSA is now .08 which isn't perfect. Zytiga seems to be taking care of it, but I may have hit the end of the road with that?? I was on Keytruda for over 3 years. PSA went up when I didn't take the Zytiga. Pretty lucky, but not cured. Best of luck to you.

Chris

[GP24]

Here is a review of the salvage options after radiation:

europeanurology.com/article...

[dmt1121]

It's standard protocol to avoid any follow surgery for prostatectomy or other procedures after radiation because the radiation damages the tissues in the area around where the treatment was done.

Avoid any surgery to this area at this point. Radiation after a prostatectomy is possible for others who may be reading this.

Good luck.

[ARIES29]

After the experience I had with my urologist at the time I will never see him or them again. He advised me to be castrated & showed me his new fancy knife he intended to use on me.

Needless to say I bolted.

[NIKKIWOOD in reply to ARIES29]

That's really gross.........😀 In my experience, surgeons are not always "people oriented" --- and your experience is a good example of that unfortunate trait.

[cancerfox in reply to ARIES29]

Sounds like your urologist was a real cutup. I bet his collection of removed trophy testicles is even more impressive than his fancy knife! 😀 🦊

[kaptank]

After radiation, surgery is out of the question. As my surgeon explained, after radiation the prostate is reduced to a cardboard like pulp, impossible to distinguish from surrounding tissues and just not operable.

[dmt1121]

I agree that this was not only gross but decidedly intimidating. Steering clear sounds like the right move. If you can, go to a teaching hospital with a good prostate cancer clinic.

Good luck!