Whole Pelvic IMRT at Mayo or Local?

[TJGuy]

Question to the group.

I will be having IMRT to pelvic floor and all pelvic lymph nodes soon. But have decision to make. I live in NC, and spend winters at home in central FL.

My Mayo Urologist whom is and will continue to be my PC doctor, performed PSMA, Choline, and MRI, to determine my PC was in 5 pelvic lymph nodes. These scans done at PSA 3.9

My Urologist Dr Kwon said I could get radiation done where ever I wanted then contact them back upon completion. He did also suggest Mayo radiologist as well for their expertise.

I met with and asked the Mayo radiologist if they at Mayo were going to be performing anything different than I would receive at a local facility.

He said that for me it would be IMRT 37 sessions total, 25 sessions then 12 sessions to go back over the lymph nodes that showed positive on the scans. The total radiation level of 56.2 greys to the lymph nodes. equipment is the least important factor but the radiation plan was the most important factor.

He contacted my local radiologist at a local lessor known cancer hospital. The local radiologist was reluctant to radiation level of 56.2 and instead said would stick to current SOC level of 50 Grey's. So it would be 33 total sessions.

Now Mayo radiologist told me that my colon is closer than normal to me pelvic lymph nodes which made it more challenging. He said that was due to my being skinnier than normal. It could also be just the way I am.

So I'm 5 10 190 lbs, carry a lot of cycling muscle in legs. Waist is 34 inch, extra weight carried in upper body.

What do you think about the radiation choices I have. Does the extra radiation to lymph nodes present better PC cell killing, or does the closeness of colon outweigh that?

So radiation will be Oct, Nov, Dec 2019 timeframe.

Wife and I are retired and have 55 pound dog we will bring wherever. So we shy away from Mayo Minnesota as too cold for our RV at this timeframe. But I could receive radiation in Mayo Jacksonville FL. Stay in our RV due to warm FL weather.

Other choice, get radiation at home in NC at lower level. Live at home, 30 mins to hospital each day. Eat at home, comforts of home to help endure effects of radiation. And I am on Lupron since Mid September 2019 for two years.

I am 59, was diagnosed March 2019, Gleason 7 (4,3) with some 5s. PSA was 24.1 on Finisterid so actual PSA was 48 plus. RP on May 31, 2017, prostatic extension but all negative margins. Cancer on Left hemisphere of prostate only. Left side Seminal Vessel invasion but no tumor. 7 pelvic lymph nodes removed and all negative. PSA at six week follow up 2.3.

Lupron for 4 months PSA dropped to 0.1 then rose to 3.9 until Late July 2019.

So is the 56.2 at Mayo better than the 50 I would receive at home? Does it outweigh staying home for radiation?

Also would following this radiation with Lu-177 / Ac-225 in Germany be possible to wipe up any PC that survived the IMRT while still on Lupron.

Thanks

[timotur]

Just my opinion, I think IMRT is less critical as to where it's done than surgery or brachy tx because a broad area is being treated instead of a defined, critical spot like the prostate itself. In your case, the tx planning is roughly the same, hitting the major lymph nodes with ~50 Gy. The only difference may be in how much risk is taken treating areas close to the colon. But your local Dr would discuss this with Mayo. You may also ask their opinion on SpaceOar to lower the risk of radiation near the colon. In my treatment, I had Brachy/SpaceOar at UCLA, then 25 sessions of 45 Gy IMRT at UCSD. The RO's coordinated the tx plan, and talked about treating a suspect mesorectal node. So I think the IMRT tx at SD was as good as what I would have received at UCLA.

[cochlear1 in reply to timotur]

The SpaceOar injectable gel is only utilized if you still have your Prostate. My understanding is TJGuy had an RP in 2017, thus removing the SpaceOar option. At this time, there is no known way to 'contain' the gel in order to create this protective 'spacer' without having the Prostate Gland in place. Normally, the Prostate Gland sits directly above the anterior portion of the rectal wall.

[timotur in reply to cochlear1]

Thank you, missed the RP part!

[Tall_Allen]

Some go as low as 45 Gy to the pelvic lymph nodes. I think the boost dose to the known metastases is a good idea. It is ironic that this is one time where extra visceral fat is actually helpful.

In this study, a dose of 56 Gy to the pelvic lymph nodes significantly increased late-term gastro-intestinal toxicity:

meetinglibrary.asco.org/rec...

[GP24]

I would postpone the radiation until the weather allows you to get it done at Mayo. I prefer to choose the best doctor I can get. Radiation can cause lasting side effects.

You can take Casodex if you are afraid the mets may grow while you wait.

[Hidden in reply to GP24]

If possible go Mayo .

[Hidden]

If you have been following my posts I keep hammering the point that RP and blasting the pelvic area in the hope of "getting it all" is a futile task, as the cancer cells are already all over the body years before (but perhaps too small to show up). A good immune system will slowly turn all those soft tissue mets into scar tissue. as long as the PSA remains low (and thus the immune system is ahead of slow cancer growth and wins that battle). Its those little buggers in the bone that are the ones to go after, and radiation damage does not help that fight one little bit.

[Hidden in reply to Hidden]

Dam!

[Hidden in reply to Hidden]

I too was lined up for the "cut and burn" but the biopsy was so expensive it left me without enough funds. Then I asked what that expensive Gleason score meant - and got the honest answer "Not much - it is just interesting, but won't change your treatment". I was actually quite savage by that time as my PSA was now 572 from 372 after 6 weeks of buggering around for what? I could not stand and getting to the loo was an expedition. Sleep came in half hour bursts. I afforded a half Lupron dose and that got me on the mend - but now I was getting the picture that there was something rotten in the "Manual" and I started reading. I realised early that the PSA was more a measure of Kill and less the cancer count - and still marvel that the entire industry still has to catch onto this simple fact. I found the stats about RP vs doing nothing - and found the survival rates were the same (and wondered for a long time why this was the case - I was still in the "get it all" thought box). My lymph mets and prostate had gone away after about 6 months, but 14 bone mets remained (and declined to 7 over the next 2 years). I still had not learned enough to avoid 4 rounds of Docetaxel, which nearly killed me - and that got me really riled up about BS in the literature and I made no visits to the Onco for 14 months. It took a while to realise that 95% of the material out there was either misleading or irrelevant, and the only way to find the truth was to experiment as we are all very different. Which is why I have a problem with the "Manual" - it tries to simplify a complex problem by lumping all Pca victims into the same treatment queue - and that is because the Cancer Machine is driven by drug companies, medical insurance, legal issues, and out of date data and concepts. Those of us who live in other parts of the world escape many of the "errors" as we simply cannot afford them!

Thank you for your many contributions to this forum.

[Hidden in reply to Hidden]

Thank you for that DavidHealth. I was beyond surgery .Inoperable . I agree wholeheartedly with you about you analysis ..

[Scout4answers in reply to Hidden]

I found this in a thread from about 3 years ago, and would like your current thinking.Thanks

Scout

but now I was getting the picture that there was something rotten in the "Manual" and I started reading. I realised early that the PSA was more a measure of Kill and less the cancer count - and still marvel that the entire industry still has to catch onto this simple fact. I found the stats about RP vs doing nothing - and found the survival rates were the same (and wondered for a long time why this was the case - I was still in the "get it all" thought box

Hidden profile imageHidden

3 years ago

If you have been following my posts I keep hammering the point that RP and blasting the pelvic area in the hope of "getting it all" is a futile task, as the cancer cells are already all over the body years before (but perhaps too small to show up). A good immune system will slowly turn all those soft tissue mets into scar tissue. as long as the PSA remains low (and thus the immune system is ahead of slow cancer growth and wins that battle). Its those little buggers in the bone that are the ones to go after, and radiation damage does not help that fight one little bit.

Report

Hidden profile imageHidden in reply to Hidden

3 years ago

Dam!

Report

Hidden profile imageHidden in reply to Hidden

3 years ago

I too was lined up for the "cut and burn" but the biopsy was so expensive it left me without enough funds. Then I asked what that expensive Gleason score meant - and got the honest answer "Not much - it is just interesting, but won't change your treatment". I was actually quite savage by that time as my PSA was now 572 from 372 after 6 weeks of buggering around for what? I could not stand and getting to the loo was an expedition. Sleep came in half hour bursts. I afforded a half Lupron dose and that got me on the mend - but now I was getting the picture that there was something rotten in the "Manual" and I started reading. I realised early that the PSA was more a measure of Kill and less the cancer count - and still marvel that the entire industry still has to catch onto this simple fact. I found the stats about RP vs doing nothing - and found the survival rates were the same (and wondered for a long time why this was the case - I was still in the "get it all" thought box). My lymph mets and prostate had gone away after about 6 months, but 14 bone mets remained (and declined to 7 over the next 2 years). I still had not learned enough to avoid 4 rounds of Docetaxel, which nearly killed me - and that got me really riled up about BS in the literature and I made no visits to the Onco for 14 months. It took a while to realise that 95% of the material out there was either misleading or irrelevant, and the only way to find the truth was to experiment as we are all very different. Which is why I have a problem with the "Manual" - it tries to simplify a complex problem by lumping all Pca victims into the same treatment queue - and that is because the Cancer Machine is driven by drug companies, medical insurance, legal issues, and out of date data and concepts. Those of us who live in other parts of the world escape many of the "errors" as we simply cannot afford them!

Thank you for your many contributions to this forum.

Report

Hidden profile imageHidden in reply to Hidden

3 years ago

Thank you for that DavidHealth. I was beyond surgery .Inoperable . I agree wholeheartedly with you about you analysis ..

[charlesual]

Hi TJGuy,

You sound exactly like me. Very, very similar except I’m about 18 months ahead. I even see Dr Kwon. I personally elected to go to Rochester for the IMRT at my 1st available opportunity. I live in Virginia. Mayo is a top notch facility with top notch Drs. I moved the family (including dogs and hermit crab) into a comfy house on a lake. We made it an extended vacation. My 10 year old son was very welcomed by the elementary school. There are plenty of great options near the hospital with plenty of things to do in the area. Dr Kwon has a great working relationship with the radiologists which makes things very seamless. My IMRT was successful but later had to go do some spot welding (proton beam radiation) on some bone Mets after my PSA started to rise again. After a short visit with Dr Kwon, I literally walked downstairs and met with the radiologist to set up the treatment. I was in and out of there with minimal hassle. I can’t say enough good about Dr Kwon and the mayo clinic. He thinks outside the box and thinks curative not palliative care. You might want to check out some of his YouTube videos. Good luck friend,

Charlie

[Hidden]

Gee, I must be different all around.... my primary treatment in 2003. 118 Palladium seeds in April; plus 25 sessions of IMRT starting in June 2003. The best thing about IMRT is the ability to target a specific area. Dr. Brian Butler is a Professor and Researcher. He did the computer work. Note: Butler also used a rectal Catheter with a water balloon attached. This technique kept the colon in the same place every time it reduce damage. End result on Colon - very light scarring. My Gastroenterologist Doctor was amazed at so little damage. I had 56 Gy doses.

To me, machine, technique, and skill of the RO are paramount. Dr. Butler has clinic at Methodist at the Texas Medical Center and teaches at Cornel-Weill. When I met him he was at Methodist and taught at Baylor College of Medicine. He was on the IMRT development team....... he and Doctor Bin Teh are the only two ROs that religiously use the rectal catheter technique.

Good luck, Kill the little bastards and get the ones floating around in your vascular and lymphatic systems as well.

GD

[Hidden]

It’s your choice to make . Besides the inconvenience of travel to Mayo , I d do Mayo . Knock that pc out .. Heal up and live again .Rt and adt has worked so far for me .. Good luck . Live well . Scott 🌵

[Break60]

I got my IMRT to all pelvic lymph nodes at the Dattoli clinic in Sarasota in 2015. But I received 75 grays over 50 sessions. Never had recurrence there.

[tallguy2]

Here's my experience for your consideration. I had 72Gy in 40 fractions in 2012 (salvage radiation after my RP where I had mets outside the prostate). This was done where our summer home is located.

Fast forward to late 2018, when I needed another 55Gy in 26 sessions in an area just above the area previously irradiated. This was due to a re-occurrence with mets seen on a new PET/CT with Axumin scan. At this time we were at our winter home across the country. I approached the local cancer center for this radiation treatment and was turned down flat. "Go back where you had your first radiation treatments done...less risky for you, the patient." So I commuted back to the city where our summer home is located and spent a month apart from my family to have this done.

So, TJGuy, where you start this radiation journey might be a place you are going steady with for life. Think carefully about who you want to be going steady with.

Best wishes!

[garyi]

What am I missing? Mayo in Jax for RT is every bit as good as Mayo in MN, and so much more convenient. That would be my vote, if I had one. Good luck!

[j-o-h-n]

You get to vote if you donate to : malecare.org/donate

👀👍😊✌😁

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/25/2019 6:09 PM DST

[Hidden in reply to j-o-h-n]

👎

[j-o-h-n in reply to Hidden]

I know, you've got short arms and deep pockets.......🙇

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 12:21 AM DST

[Hidden in reply to j-o-h-n]

How about no arms and no pockets ???

[j-o-h-n in reply to Hidden]

I can buy that....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 5:17 PM DST

[j-o-h-n in reply to Hidden]

youtube.com/watch?v=rd2Z_IM...(Not working as expected?)

This goes good with a joint....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/26/2019 12:24 AM DST

[Hidden in reply to j-o-h-n]

Colorful ! Thanks