Radiation Advice : Hi all! I had a... - Prostate Cancer N...

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Radiation Advice

Portugal-2 profile image

Hi all! I had a Davinci RP. Five years ago. My PSA has been doubling in last 6 months. My doctor recommended a radiation oncologist.

I would love to get input from others that have done 8 weeks of radiation. Please give me suggestions and tips on what questions to ask the RO and what to expect, how you handled anything externally or internally that worked for you, or you used during the treatments. Also, were you able to continue working while going through the 8 weeks. Any info, tips, suggestions would be appreciated. My wife has stage 4 aggressive thyroid cancer and I need to work. Thanks for your help.

Anyone have a recommendation for Radiation Oncologists in SouthJersey area?

16 Replies

I don't know how much research you have done so far, but I have my appointment with the RO this week and I'll have a bunch of questions which might help you as well. The machine at this center is advanced enough to do SBRT, which allows for 5 days of high intensity treatment (think CyberKnife). It can also do the traditional hypofractionation (IMRT) which requires 8 weeks. I'm going to ask whether it can do modified hypofractionation which is only 5 weeks at higher radiation, kind of between regular IMRT and SBRT. I'm going to ask him which treatment protocol he recommends and why? They use IGRT (image guided) using gold seeds. You'll want to know if they use image guidance which will reduce collateral radiation by tracking the position of your prostate during treatment. You want a center that can track the prostate position. I'm going to ask how many patients he has treated and their outcomes--both PCa-wise and side effects. I'm going to ask his opinion about proton radiation vs. the photon radiation he uses and which he'd recommend a family member use if they had a choice. If he says photon, I'm going to ask him to explain, regardless of the statistics, how it makes sense that x-rays that affect the tissues before and after the target don't cause more collateral damage than protons that only release their energy at the target. Along those thoughts, I'm going to ask him how radiation kills cancer and not normal cells when we've always been taught that x-rays can cause cancer (I'll probably ask him for a primer on how radiation cures cancer so I hear it from him). Ha!, thanks for the question, my writing this down helped solidify the questions I'm going to ask on Friday :).

Radiation DOES damage normal tissue. It is useful in treating cancer because in theory it will damage cells that are dividing rapidly more effectively. Also, various types of radiotherapy are designed to focus the radiation at the tumor, while minimizing exposure of other tissues. The degree of damage to normal tissues depends on the ability to minimize exposure of tissues OUTSIDE the target. I am no expert on the relative merits of proton vs. photon RT--in fact I'd love to get an explanation for how photons (which in my day were "packets" of light energy) relate to generation of gamma rays, which in my prehistoric physics class was a totally different area of the electromagnetic spectrum.

Thank you for your input and bringing up a question of the differences. Hopefully we’ll get more information from others on this forum. My situation is not a tumor. It’s a rise that is basically microscopic. Urologist is thinking it’s from the pelvic area. After my appointment I got RX for a pet scan with Axumin. I will decide after I do that.

So if anyone has a great SOUTHERN NEW JERSEY recommendation of a radiation oncologist that has experience after this test with treatments, I would really appreciate that!!!!

Graham49 profile image
Graham49 in reply to dentaltwin

Light, x-rays and gamma rays are all photons but the frequency of the wave is higher for x-rays and gamma rays. The smaller wavelength of these photons allows some of the photons to penetrate materials opaque to light, and their high energy means that they can damage living tissue.

dentaltwin profile image
dentaltwin in reply to Graham49

Thanks--apparently usage has changed in the 47 or so years since my last physics course!

"Not only is light made up of photons, but all electromagnetic energy (i.e. microwaves, radio waves, X-rays) is made up of photons."


dentaltwin profile image
dentaltwin in reply to Graham49

Darn--now you've got me interested in the actual distinction between photon therapy generated in a linear accelerator in the x-ray or gamma spectrum and garden-variety radiation therapy in the x-ray spectrum--a somewhat embarrassing lack of understanding in someone who uses (diagnostic) radiation on a daily basis.

Thank you for such a wonderful reply filled with great information and questions!

Please be sure to visit a proton therapy center. There is one in NJ. My own research and that of many men with prostate cancer, is that photon radiation oncologists seldom recommend proton beam because they don’t offer it. Depending on many factors EBRT or IMRT, especially with combo of newer equipment and experienced radiation oncologist may be fine for you with minimal side effects and after effects however those should be even better with proton. Either one has similar statistics in non recurrence of the cancer.

After many months of my own research including interviewing around 40 men I chose proton. I am currently one third into my 28 session course. I am fine thus far.

Good luck and at least visit a proton center.

Portugal-2 profile image
Portugal-2 in reply to MBOY1

Thank you! All the best to you!! Did you have RP and are you treating a specific tumor? Does proton treatment/ photon treatment help in my case with no found tumor, just a PSA rise that’s doubling? Also do you or anyone out there have a recommendation for a southern New Jersey proton treatment place?

MBOY1 profile image
MBOY1 in reply to Portugal-2

I did not need surgery, just radiation. It is possible that you can contact Laurie Proton Therapy Center in Brunswick, NJ which seems to be closest proton facility to you and have them request your pathology from your doctor and give you an opinion via phone conference. If not you’ll have to visit so can’t guarantee they’ll treat you or not as a viable candidate. It’s worth the small amount of calls and hassle to determine if thus is a possibility or not. Good luck.

Portugal-2 profile image
Portugal-2 in reply to MBOY1

Thank you!!!!

I would agree with Mboy1. Please look at Proton radiation. I did nine years ago, my PSA today is 0.070. Stable for nine years. I thank God for Tim Drain, the man who told me to look into Proton Beam radiation. Good luck and GOD bless.

I'm scheduled for RP in 3 weeks at Beth Israel in Boston. I've been going to support groups there and at Brighams/Dana Farber and found that both groups (which meet monthly) had medical professionals, usually doctors, starting the group, and this keep one in touch with latest advances. So if the PSA is showing up after RP, I would suggest going these groups, even if it's a bit of travel, to stayed cued in. At one meeting you hear from a doctor/s and tons of info from others who have been in monthly attendance for months or years.

What was Gleason at diagnosis?

Mark in Boston

Thank you! Gleason was 10 originally. I would love to attend but need to work to afford to save myself and my wife’s life. Trying very hard to stay positive and make the right choice for both of us.

Radiotherspy means you will be treated with radioactive iodine

If you are deficient in iodine your body will absorb this poisonous iodine bc it can't tell the difference between good and bad iodine ?

Therefore you should get a good source of iodine - organic sea kelp is a good choice you can buy it online

Also ditch cows milk and rethink your diet

Lastly a very good habit is to brush your teeth in bicarbonate of soda it will alkalize your body and cancer can't thrive in alkaline

I had my 8 weeks ending last February. No issues. My PSA was 4.4 and an 8 (4+4) Gleeson. After radiation PSA was 0.43.

You will just have to find a time that works for you around your work schedule.

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