Well, here I am....

You've already seen a lot of good direction from other posters up thread, so all I'd like to say at this point is that while this is a tougher diagnosis than many, you still can be successful in treating this, which is something I've seen time and time again here. Most of do us well--even the guys with high-risk diagnoses. I hope we can be helpful here in giving you further direction. Good luck to you and I hope we can continue to be helpful to you.

BB, Glad you found us, but, sorry you’re here with a tough diagnosis. You’ve received great information and I believe you to be a good listener.

There are very good reasons why a lot of people that contribute to this forum may have a bias to radiation. Modern radiation is safe, effective and typically provides low rates of long term side effects. Yes surgery does provide a pathology of the tissue removed; but, provides no guarantee of what was in the tissue left behind. Given the side effect risks and the loss of two of the three urinary sphincters that’s a pretty high price to pay. I do know of several guys who have had great results with surgery especially if their urinary function was already poor as a result of BPH.

I believe it would be a good idea to expand your radiation search to include Atlanta where you can find some of the world’s best practitioners including HD brachytherapy and SBRT. Keep learning and choose wisely. Terry

BB, I just spent a few minutes googling and found numerous radiation oncologists in the Greenville and Anderson area. Two that looked interesting were PRISMA and Blue Ridge Oncology. Also the medical school has a department of radiation oncology. So there are a few leads for you to start making contacts to see what is available.

Oh dear, please don't be angry, there is no need.

Here is a short (2 minutes 13 seconds) You Tube video of Dr. Mark Scholz, MD, director of the Prostate Cancer Research Institute discussing surgery after radiation therapy for prostate cancer.

https://www.youtube.com/watch?v=xecfj885pve

It serves to clarify the point without resorting to politics of any kind.

Here is a reference on radiation treatment side effects from the American Cancer Society:

https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/effects-on-different-parts-of-body.html

Hope this helps.

I had RP quickly followed by ART. That was the plan from the get go. Urinary issues also factored into the RP decision. As it turned out primary RT wouldn't have worked for me anyway as I had micromets out of the gate.

I'm not big on RP if primary RT will do the job just as well, which seems to be the case most of the time.

A curiosity for me has always been the manner in which radiation kills cancer cells. My understanding is that any cell is more vulnerable to radiation at the time of cell division, when the cell's DNA is vulnerable. Because cancer cells tend divide more frequently, and also because they don't repair their DNA very well, radiation is effective at killing cancer cells. Maybe this is part of the reason for so many fractions of traditional RT -- more chances to catch cancer cells as they are dividing. I'm guessing that in reality it may be more complicated than that. My curiosity comes in by wondering if radiation as primary treatment might be less effective for people whose prostate is basically a bag of cancer cells. Can 40 fractions really get all those cells at the right times? (Of course, like me, such a person might have micromets anyway.) It will interesting to see how durable low fraction RT ends up being. And seeds seem like a good idea because they are attacking the cancer with radiation 24/7.

I guess my point is that I could see situations where de-bulking with surgery followed by mopping up with radiation could be a valid plan.

Just some thoughts, that are probably flawed, on the surgery v. radiation wars.🙂

@Trailguy—Dang…after watching the video and reading American Cancer Society I can’t help but wonder why anyone would ever choose to have salvage and spot radiation totaling 176 Gy. I apologize for my sarcasm; but, agree every treatment including AS includes the risk of side effects. It’s critical or every individual to make an informed decision and I’m glad this forum helps provide valuable information to do so. Far too many men don’t go beyond their urologist. Terry

Tudpock18 said...
I looked at the Dr. Scholz video that Trailguy referenced and it did give some very specific and good info about the difficulties of surgery after radiation. I think this is a very real concern -- if I had a failed radiation then I would never choose salvage surgery but would opt for another salvage choice.

Beyond this, and the real reason I found Trailguy's post helpful, is that the NEXT Dr. Scholz video that was up was, "Which is Better - Surgery or Radiation?". https://www.youtube.com/watch?v=pya8n78br7s I think this video is a must-see for any patient deciding on a treatment -- the educated opinion of a well known prostate oncologist who is neither a surgeon nor a RO.

And - another video to the point from Dr. Scholz:
https://www.youtube.com/watch?v=agevawx2ons

Jim

if you fail radiation -- especially the radiation the OP would require -- the horse was already out of the barn

Mattam, some clarification as to how radiation kills the cancer. Your mention of the cell dividing status is more applicable to cytotoxic chemotherapy. Some drugs work during the division and others work between divisions and that is why for most cancers a cocktail of two or more drugs are used over several cycles. Chemo is not a frontline PCa treatment due to the very slow division time of PCa. Prostate cells, and thus PCa cells, are about the most long-lived cells in the body often going two years before dying and have a long period between divisions. With the few men that use chemo for PCa it is usually just one drug (taxotere) given in relatively small doses and more cycles than most other cancers. Neuroendricine is an exception that is more susceptible to chemo, but not to ADT as the cells no longer retain much of their prostate heritage.

Radiation affects the all the cells at all times by damaging the DNA. Healthy cells can either repair the damage or purposely die and get replaced by another healthy cell. Cancer cells can’t effectively repair the DNA, can’t then divide and eventually die. Most cancer is more vulnerable to low doses over a long period of time preventing the cells from repairing the damage to their DNA and resulting in cell death. PCa is different as it is more vulnerable to high doses over short periods of time. This was proven in many studies that basically led to the development of High Dosa Rate Brachytherapy and has been copied with external beam SBRT.

The concept of low doses over many fractions comes from early development of radiation treatment in order to provide a killing dose that was not overly toxic to the patient. As technology advanced, more targeted methods like HDR-BT and SBRT were developed to limit radiation to the healthy cells and give a higher dose to the cancer, which we are trying to kill.

trailguy said...
Oh dear, please don't be angry, there is no need.

Here is a short (2 minutes 13 seconds) You Tube video of Dr. Mark Scholz, MD, director of the Prostate Cancer Research Institute discussing surgery after radiation therapy for prostate cancer.

https://www.youtube.com/watch?v=xecfj885pve

It serves to clarify the point without resorting to politics of any kind.

Here is a reference on radiation treatment side effects from the American Cancer Society:

https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/effects-on-different-parts-of-body.html

Hope this helps.

Thank you my friend. I'll check them both.

Thanks, my Friend. No apology necessary, Terry. It's all good.

I got the usual side effects from surgery, a bit worse than expected due to the specifics of my acinar adenocarcinoma. The surgeon said it was "sticky", it had grown like a sea urchin - the tumor was covered with 'spikes' of various sizes that stuck to whatever they encountered. I had a 1 mm margin and several smaller ones. Additionally, the tumor was bigger than it had looked under MRI and scans. The 0.2 PSA 2 weeks after surgery required the Firmagon>Lupron>Eligard, that 2 - 2 &1/2 year PCa cell lifespan was why I was on those drugs for the first 2.5 year run. That and during surgery, biopsy of some lymph glands "showed exposure, though not metastasis". It also called for the first 70Gy RT to the prostate bed and immediate surround.

2.5 years after I quit Eligard, my PSA began to climb again, so at PSA=3 I got put back on Eligard+Xtandi ($11,000/month with a $2600/month copay) and got the axumin PET scan that showed those 3 hot met lymph glands. The doubling rate had been dropping like a rock after slowly going down for quite a while.

Eligard had killed 1 testicle before the PSA uptick, the other died soon after. Unchemmed T was 126, my normal was 750 before. Xtandi gave me a list of side effects (Shingles (despite getting both vaccine types) pruritis, constipation, vivid nightmares, sleep disturbances, getting up to pee 5 times a night, constant nosebleeds, anal bleeding, chronic fatigue, nausea and finally becoming unable to walk - literally crippling me. It has taken me 6 months to almost get back to normal)

My participation in this forum had introduced me to the ORIOLE study, so I read everything I could find about that. This convinced me, since I already have a ton of permanent side effects from Leuprolide and Xtandi chemo, I took the increased chance of further RT SE's to maybe get a 'cure' and be done with this stuff.

Yeah, I got a lot of radiation, but the side effects this time around aren't as bad as they were the first time 9 years ago. Worth it if I am indeed done, and the RO claims he has a good track record with this for killing the PCa. I have some intestinal side effects, but am confident that these will start to fade in about a year and a half after I pass the side effect nadir.

Meanwhile, I will stick to my over-the-top exercise routine and get back to distance running when the ice goes away. Right now it is hard enough to just walk my Lovely Lady Labrador on the glare ice.

Not a MO, that’s saved if treatment fails, a MO would manage your systemic cancer. That’s why getting the best primary treatment plan for your pc is so important so you never need an MO.

BBinSC,
Welcome to the forum that none of us really wants to be in. You will definitely be on track consulting with at least one or more MO or RO at a major Cancer Center. Even if you like your Urologist, with your situation, I think a MO will serve you best, in my humble opinion, despite what Fauntleroy just posted. (I never heard save the MO until later!). I my case I suppose, it was already...later! But fortunately, much later now and still undetectable on Zytiga. I do agree with him saying to explore all options before making a final decision.

Also, I agree totally with DjinTonic and I am thinking a MO may request some sort of CT scan before giving treatment options. Chin up, I was 57 years old ten years ago when diagnosed with Stage 4 and GL 4+3 in some of the 12 biopsy samples with 75%-85% involved.
Keep the Faith and keep us informed.
Wings aka Dan in So Cal