Help! Proton Beam Therapy vs Surgery?

lentan
lentan Member Posts: 2 *
edited July 25 in Prostate Cancer #1

Hello! I am new to this group and new to the family of brothers with a prostate cancer diagnosis. I have read through many of your questions and answers and appreciate the support you have given each other. 

I can really use some help with deciding on surgery or radiation treatment for my prostate cancer. I am 55 years old and very healthy. 


I have gone through the normal workup of MRI, biopsy, PETScan, etc. Below are my biopsy results. The PETScan found no lymphatic or hematogenous metastasis. I have seen radiology oncologists and surgeons at Mayo and MD Anderson in Phoenix. 

Left apex lateral (C1): Prostatic adenocarcinoma, Gleason score 7 (4+3), grade group 3, 5 mm (55% of the core). Percent pattern 4: 60%. Left mid (E1): Prostatic adenocarcinoma, Gleason score 9 (4+5), grade group 5, two foci (7 mm, 8 mm) involving 2 cores (75% of the total tissue). Left apex (F1): Prostatic adenocarcinoma, Gleason score 9 (4+5), grade group 5, two foci (4 mm, 8 mm) involving 2 cores (60% of the total tissue).

The universal recommendation has been surgery with nerve sparing on one side and removal of my lymph nodes to test for cancer cells (even the radiology oncologists have recommended surgery). 

* I am now torn because I recently spoke to a trusted friend who had very good results from proton beam therapy at Loma Linda and he highly, highly recommends that therapy option. 
* Thoughts on the pros and cons of a radical prostatectomy vs. proton beam therapy? 
* I have heard many of you say that surgery is often a better option initially because I'll have the option to follow up later with radiation treatment (if needed) but not the other way around. Is this true? 
* I am mostly concerned about my sexual health and incontinence and bowel issues post surgery. * Does proton beam therapy reduce the risk of side effects?

Any thoughts are very much appreciated. I am scheduled for surgery on July 31st and I feel like I'm starting over in the decision-making process. Help!

Comments

  • lentan
    lentan Member Posts: 2 *
    #2

    If it's important my PSA was 5.2 about 2 months ago but it's increased to 7.2 recently.

  • centralPA
    centralPA Member Posts: 322 Member
    #3

    Sorry you find yourself here, @lentan , I’m not a doctor so what write is based on reading. I’m in AS myself.

    Both radiation and surgery can do the job, with about equal chances of biochemical recurrence (BCR). If BCR occurs, though, the long term mortality is higher with radiation as the initial therapy.

    If you have radiation and then experience recurrence, there are still a bunch of therapies to attack it including more radiation (brachytherapy), focal therapies, and in a pinch salvage surgery. There are things you can do. You can do more things following surgery.

    Surgery obviously has greater immediate side effects, especially if you know you are losing half of your nerves supporting erections.It is a road well-trodden, so lots of support out there.

    You have some serious cancer, kinda sorta lucky it seems to be just on the left side. Definitely action is required.

    Some papers…

    https://www.nature.com/articles/s41391-023-00712-z

    https://www.nature.com/articles/s41585-020-00384-7?fromPaywallRec=false

    Mainly, just writing to say you’ve been heard!

  • Marlon
    Marlon Member Posts: 110 Member
    edited July 24 #4

    lentan, in my situation both then surgeon and radiation oncologist agreed I could have equally good outcomes with either IMRT or surgery. But my age was right on the borderline - younger than 67 and surgery would be preferred; older and radiation would have been preferred. There are some pretty scary potential side effects with either, especially if you have the hormone therapy in conjunction with radiation.

    I chose surgery and glad I did even with the side effects. My thinking was (1) I wanted the cancer out of my body ASAP, and (2) yes, I can get radiation after surgery if I need it. I looked into proton therapy as well, but my radiation oncologist said it wouldn't be likely to have a better outcome than regular IMRT in my situation.

    I have to think your doctors' recommendations are based on your situation, your age and your test results. Yeah the potential side effects either way are scary, but not as scary as cancer. By all means research the heck out of everything until you're satisfied.

  • Steve1961
    Steve1961 Member Posts: 618 Member
    #5

    first of all you need to have the decifer testing done to see if any of that cancer is cribiform .cribiform is radiation resistant..also Every what are the 10 15 20 out omes from proton therapy they won’t tell you because it hasn’t been around that long and it hasn’t really been tested. If I were you I would just do the surgery and not look back. I messed around at age 57 and did radiation and now they tell me that the crib form was radiation resistant so I am now recovering from salvage surgery and if it does happen to come back again, I am screwed i cannot do radiation again. If you look up gold standard prostate cancer that’s contained to the prostrate is surgery Plan B radiation plan c dreaded hormone treatments that’s just my opinion. I wish to God I did surgery first good luck . Stick to the plan

  • Rob.Ski
    Rob.Ski Member Posts: 171 Member
    #6

    I was 51 at time of treatment. Had 2 radiologist, 2 surgeons recommend surgery, similar reasons you are hearing. If it is sugery you choose, seek out best surgeon you can find at respected hospital. Ask if they have outcomes of their patients vs. General info. I came out of it with minimal side effects. I'm fully continent, sexually active.

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    edited July 24 #7

    Hi,

    First of all the choice is up to you and your medical team based on your unique set of circumstances. But, if you choose radiation I feel that Proton is the way to go, the beam stops at the cancer site and does not go past it. Just remember radiation just kills the cancer and leaves other Prostate tissue behind which might turn cancerous later on. But that could be treated with more Proton therapy. I had robotic surgery approx. 10 yrs. ago and don’t regret it, I am still undetectable today. Which ever you choose get the best doctors+facilities to get the best results. Experienced doctors who have the best equipment is a hard combo to beat.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited July 25 #8

    With several Gleason 9 spots, it seems to me that proton beam therapy is not sufficient to achieve a 'cure'. For Gleason 9 cases, one often sees the recommendation for 'double' radiation therapy plus androgen deprivation therapy (ADT) for at least 12 months. For instance, brachytherapy + IMRT + ADT or some variation thereof.

    More in general, although one often sees the statement that proton therapy is 'better' than photon therapy, there are no comparative studies to prove that. I do know of one ongoing (13 locations). Personally, I am anxiously waiting for the result, but as is so often the case, one wants to see a follow-up of at least five years.

    Study Details | Proton Therapy vs. IMRT for Low or Intermediate Risk Prostate Cancer | ClinicalTrials.gov

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #9

    Hi,

    Here are some insights into Proton therapy vs traditional external beam radiation.

    https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation#:~:text=Traditional%20radiation%20delivers%20x%2Drays,to%20damage%20nearby%20healthy%20tissues.
    https://cancer.osu.edu/for-patients-and-caregivers/learn-about-cancers-and-treatments/clinical-services-at-the-james/radiation-oncology/treatment/proton-therapy?gbraid=0AAAAAoebTA2uCW8r_fV4_lppwYpHjnymz&gclid=CjwKCAjwzIK1BhAuEiwAHQmU3g2X5bJvI97iTagcs19BKSEwNgXWuGd8pWb3xnDfuKfP6ltEAuwczBoCchUQAvD_BwE
    Even if Proton therapy has the same “cure” rate as traditional X-ray based treatments the fact that it does not go past the site to possibly cause tissue damage to other areas is a big plus in my humble non medical opinion.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited July 25 #10

    Proton beam facilities are very expensive to build and institutions that have done so want to make it worthwile…

    Here is a statement from the American Urological Association:

    Clinicians may counsel patients with prostate cancer that proton therapy is a treatment option, but it has not been shown to be superior to other radiation modalities in terms of toxicity profile and cancer outcomes. (Conditional Recommendation; Evidence Level: Grade C)

  • Stephens1961
    Stephens1961 Member Posts: 17 Member
    #11

    My history PSA 36 active survaliance for 10 years 5 different biopsies negative until 2021- prostate surgery -cancer 3+4 and at positive margins 3+3. Post surgery PSA 4.0. No cancer found in bones or lymp nodes by scans post surgery. Six months wait then adjuvant-37 proton therapy -six months ADT treatment- PSA non detect for last 18 months. Why the high PSA results after surgery ?

    A mystery to all -thank goodness I had a second chance with radiation. You never know and no good answer to how you want to attack your cancer but this I know. Get your info, either surgery or alternative treatments, all have side effects don’t think they don’t and keep positive.

    Don’t give up

    Don’t ever give up

  • knowayout1
    knowayout1 Member Posts: 6 Member
    #12

    Everything I have read states that any cancer above mid grade (above gleason 7) is not as likely to have a positive outcome with any radiation treatment. I am gleason 4+3 and I have not made a definitive decision yet, looking at cyberknife at Georgetown. Not an easy decision, I am still also considering robotic surgery.

  • neilm
    neilm Member Posts: 57 Member
    #13

    Not a doctor but I am looking at Proton Therapy as well. Comments are correct that data is lacking which differentiates Proton from Cyberknife. I think there are some who believe it is slightly more effective ,10% at destroying cancer. I don't have that study at my fingertips. In theory it makes sense and I think if you travel outside of the prostate cancer realm into other cancers there is positive (side effect )data on those treatments, does it translate to Prostate Cancer? I don't know. If you do proceed with radiation consider a Prostox test, it will give you a genetic analysis indicating whether your likely to have more side effects with shorter or longer radiation treatment cycles. From what I have read you have a better chance of surgery recovery than I do ( I am 69 ) . But as indicated check it all out as you do seem to have aggressive cancer , great news on the PETscan. I would love to hear from anyone out there that is 10 years down the road on any radiation therapy and see what long term side effects may be. I will also paste an image for a great group for recently diagnosed patients. They have a monthly meeting and its really a wonderful group with a urologist hosting. Very helpful group discussion for me!

    image.png

    Best of luck with everything.

    Neil

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