Proton Treatment Scheduled

Good morning, I'm 61 years old and recently diagnosis with PC. My PSA was 5.26. Ordered a DRE, uro did not feel anything on the prostate. Had the bio, 8 cores from each lobe. Right lobe ok. Left lobe 2 out of the 8 had cancer. One 0.67% other 3.%. Stage T1C. Will start proton therapy (radiation) on June 20th in Oklahoma City (Procure). 44 treatments. BC/BS will not pay, did so until early 2015.

I'm a little nervous but feel very lucky that they and I caught this early. Any others out there with similar stories? Would like to hear feed back and what I should expect. Heading down to OK real soon for the Visicoil Markers then later for CT and MRI.

What are those coils used for anyway? Thank you to all who respond. Keep the faith. My family members are great help in this matter, could not of got this far without them. Thanks to all of you.

23 Replies

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  • Oh yes, Gleason score of 3+3=6,

  • My six month PSA went from 5.31 to 11.51. Glad I had it checked. Does this mean it may be a little more aggressive? Proton therapy begins on June 20.

  • I'm happy for you, your having Proton Therapy. I think it's the best treatment for prostate cancer. I had it in 2011 at

    MD Anderson in Houston, Texas, cancer is gone and I had a good time. Any questions you want to ask me I will be happy to answer. My email is a34jw88@yahoo.com. Best of luck

    Michigan Jim

  • Hi 1Max

    I'm on PB treatment #35 of 44 at Loma Linda. I too had relatively low PSA, 5.7, but 9 Gleason (4+5), on biopsy. I am additionally on HT (Lupron) that I attribute my "tank full of gas without any octane" lack of previous "horsepower". But the PBT choice is reinforced everyday in my group of "brothers" when I hear of their medical and financial backgrounds that allowed them to make very informed choices. I'm 66 and Medicare/United Healthcare are covering my treatment that has allowed me a freedom that other choices would not have. I hope you are able to feel as comfortable as I do in your decision and treatments, and enjoy your quality of life for many years to come.

  • I'm scheduled to go t Provision in Knoxville next week for my work up to begin Proton Radiation. Aetna would not pay.

  • Did you go to the State Department of Insurance for an external review? Insurance companies are tough to beat. I will never trust them again. The difference in cost proton vs photon is very minimal. You would at least think they would pay us for the cost of photon (xray) radiation. They know the number and they would pay for that type of radiation.

  • I'm going to fight all the way to the insurance Commissioner ( I know, good luck with that, right?).

  • Aetna used to do this, pay as "out of contract".

    It forced the facility ( if a preferred provider) to accept their contractual allowable, and the whole cost was past on to your employer. The intent was to drop the price to an "affordable" amount, that you reimbursed your employer for. This was explained to me by my Aetna advocate. It was discontinued in 2015.

  • Glad to hear that bdriggers. Had my treatment there middle June to middle of August 2015. Great group of people to help you in all ways including the treatments.

  • Wish you the best! It is very good that you are getting a MRI and CT. Please ask if you can also get a bone scan. That is critical. Hopefully they will all come back negative. The Dr's could then use them as a baseline. I am glad you are not going under the knife and getting tests done. Hopefully all the tests, including the bone scan, will be negative. But it is critical to know where you are.

    Here is my story so far. Please note that some PCa does not raise your PSA. Some can be quite agressive and still have normal PSA. I am 58 years old and been having digital exams since 40 and PSA since I was 50. Mine was 4.7 at the time of diagnoses (G 8, T3N1). (It jumped to 11.7 after the biopsy.) Had surgery (April 18, 2016) where they found it migrated to the pelvic lymph nodes. The pathology report stated it is a rare form of ductal cancer (~0.4%) that is highly aggressive. Will undergo additional tests next week to determine if it has spread past the pelvic area (Stage 4 D1 vs Stage 4 D2). Depending on the results and how fast I recover from the surgery, treatment(s) could range from hormonal to the trifecta (hormonal, radiation and chemo).

    All that said, I plan on being well enough to go SCUBA diving later this year. There are people in this group with a lot more agressive cancers than either one of us that are doing well. So we both have to fight as hard as we can!

    Good luck, will keep you in my prayers.

  • Thank you so very much. I have several young grandchildren and I'm sticking around for a long long time. Thanks and best of luck to you.

  • I had 37 IMRT treatments. I'm guessing it's similar. The markers are placed inside so the machine can pinpoint where to zap you everyday. They want you lined up so the radiation hits exactly where they want. The treatments are easy. Like getting an X-ray. You change into dr. scrubs and lay on a table. The techs go into the next room. The machine turns on and goes around you zapping the cancer from different angles. It doesn't hurt. You don't feel a thing. It only took about five minuets a day for me. Longer to change clothes and back. Then you get up and go to work or home. After the first couple of weeks you might feel a little tired but it's not bad. Good luck. Randy

  • It looks like I am headed toward that same IMRT, with the 'calypso' markers. They want to give me a six month eligard hormone treatment shot and then begin the radiation 2 months later. My psa was (only) 2.7 but the prostate was palpable. Biopsy turned up gleason 8. They gave me a choice of hormone therapy or not. CT and bone scans negative. Wonder if I should get the HT and if so why 6 months. Going for a 2nd opinion on whether surgical removal would be better but previous TURP makes that a bit difficult and risky. Age 66 here. I would get 9 weeks of radiation. No problems with painful urination?

  • It doesn't sound to me as if you require immediate treatment. Many would regard Gleason 6 as a pre-stage to prostate cancer and would therefore recommend keeping a close eye on things rather than treating it aggressively. What do others think?

  • The coils are an improvement on the gold markers I think. They don't produce artifact images on MRI.

  • I couldn't respond to this yesterday, & expected that there would be plenty of replies by now, similar to the one from rhbishop2. That didn't happen, so I dug out this old post by Dr. Myers:

    askdrmyers.wordpress.com/pa...

    - scroll to the Nov 9, 2011 entry:

    "PCa Screening & Overtreatment?"

    Five years later, I feel that it's pretty clear that active surveillance [AS] is a successful strategy for the majority of men with GS=3+3. The 75% that will never progress avoid the morbidity associated with over-treatment. The remaining 25% are mostly caught before the disease becomes metastatic.

    The big problem with GS=3+3 is that the probability of upgrade following surgery is quite high. The mathematics of the biopsy process means that many of those diagnosed after a repeat biopsy at GS=3+4 or 4+3, never had prior warning of being at GS=3+2 & 3+3.

    It may be that most of the 25% of GS=3+3 cases that "progress" are already really GS=3+4. If there is a major problem with AS, it is the lack of adoption of blood tests that have been shown to dramatically improve the sensitivity & specificity of the PSA test.

    In some prior posts I have mentioned the 4Kscore:

    4kscore.opko.com/informatio...

    "The 4Kscore test provides a percent risk score that is your chance of having aggressive prostate cancer."

    It might give GS=3+3 men a timely warning of perhaps being in the 25%, & could ease the minds of those in the 75%.

    I'm not knowledgeable about other tests that may have made it from the lab to the marketplace.

    A 2013 study looked for a way of assessing the risk of an upgrade to a Gleason score 3+3 (GSU) [1] [2]:

    "Obesity, prostate size, and PSA density were the only clinical variables that independently predicted GSU"

    “Anywhere between 30 to 50 percent of apparently low-risk patients actually find out that they have higher-risk prostate cancer after radical prostatectomy and biopsy,” said study principal investigator Dr. David Jarrard, professor of urology in the UW School of Medicine and Public Health."

    Rising PSAs & repeat biopsies will identify those cases in time, but available tests should be aggressively pursued IMO.

    -Patrick

    [1] onlinelibrary.wiley.com/sto...

    [2] med.wisc.edu/news-events/re...

  • I debated with myself for a while about whether to say anything here but finally decided that I should. Of course I'm not a doctor and you should certainly consult with experts before making any final decision.

    Having said that, the first thing I'll say is that I believe that Patrick is right. You are at the very top of the list of candidates for active surveillance. Here are the criteria specified by Johns Hopkins Urology Department - certainly one of the world's leading centers for Active Surveillance and for prostate cancer in general:

    urology.jhu.edu/prostate/ac...

    The second thing I'll say is that, unless there are newer studies showing something different in the last few years, the statistics for cure rates for proton beam treatment are not higher than for x-ray treatment. They're about the same. That's why insurers are backing down from any commitment to pay for the more expensive therapy. Here's an article from 2013 about it:

    medscape.com/viewarticle/81...

    Finally, I'm not personally convinced that the side effects (or lack thereof) of proton beam therapy are any better than the side effects from x-ray therapy. In both cases, significant damage is done to the prostate and that has to be so in order to destroy the cancer. Many side effects are due to radiation damage in and immediately around the prostate itself. Therefore those kinds of side effects will occur with either treatment. It is true that proton beam therapy is able to concentrate more energy in the target area and less in surrounding tissue, but brachytherapy does the exact same thing and even external beam therapy with IMRT is usually pretty good these days at avoiding serious doses of radiation to the most sensitive structures around the prostate.

    I don't know how much you're committed to paying for proton beam therapy, but it's possible that all of that money (and I know someone who was billed $70,000 for it at Loma Linda) is being spent for a treatment you don't need, and possibly with side effects that may cause you more damage than the cancer over the long run.

    I recommend the following:

    Call your radiation oncologist and your urologist. Ask them if you are a good candidate for active surveillance. If they say you are not, then ask why not, and who would be a better candidate.

    The only legitimate reason that I think they can give you is your age. At only 61, you (hopefully) have many years ahead of you in which the cancer can develop. But as far as your clinical characteristics, you're at the very low end of risk.

    Unless they have arguments that I haven't heard of, or have reason to say that my arguments are wrong, then at the very least I recommend postponing treatment for a while and beginning active surveillance. I think the chance that your disease will get out of control and kill you in the coming year may be lower than your chance of being killed in an auto accident on the way to and from treatment.

    I say all this with some trepidation. I know that I'm putting you in a quandary. I want to make your life better, not worse. If you have lots of money and the cost of proton treatment is no problem, and if you will be a nervous wreck without it, well, you have to do what you have to do. But I recommend that you do some research and talk to some experts about active surveillance.

    I wish you the best of luck.

    Alan

  • Alan saved me a lot of typing. I endorse everything he mentioned in his reply, above.

  • Has anybody had experience with the SpaceOAR Hydrogel system for rectal protection to supplement Visicoil or any other fiducials ?

    spaceoar.com/what-is-spaceoar/

  • That looks interesting. Another case where Mayo can provide but my in-network provider doesn't. Don't know the cost, but I'd sure like to have it before my radiation treatments.

  • The markers are used to align your body so the proton rays can target your prostate precisely.

    I also had proton treatment. I was PSA 10.8 and Gleason 7 (3+4). After treatment, My PSA bottomed out 0.5. After my 3-month PSAs bounced up and down, successive scans (CT, PET and MRI) were negative. Eventually, an MRI on my pelvic with endorectal coil did show a swollen left iliac lymph node. A biopsy proved mPCa. In the meantime, my PSA had risen to 7.8. Treatment of 3-month Lupron and 30-day Casodex brought it down to 0.2. Follow up treatments of 3-month Lupron got it down to undetectable where it has stayed for 9 months. Knocking on wood it will stay that way. My onc is treating this as a chronic disease and I will stay the path on Lupron until failure. The MRI scan also didn't show any focal recurrence within the prostate. It seemed that the proton treatment did its job.

    In short, current scan technology can't detect micro mPCa. I, also, read somewhere that over 40% of locally treated PCa (no matter what the treatment type is, i.e. surgery, radiation, etc.) had detectable recurrence. Some recurred after 10 years. Cure is just not at hand yet. Nor is micro mPCa detectable. Perhaps, 100 % of men treated of PCa live with PCa, a few to die from it and the rest live despite of it.

    I wish you the best. It's a painless treatment. The great majority go on to live their lives without concern of life-affecting mPCa. For the rest of us, there are treatments available to prolong our lives to the fullest while we wait for the cure down the road.

    Cancer affects every American family. I surely hope the gov't. will proceed with its moonshot in a big way. We need to attract the brightests to solve this problem.

  • Have you had a second opinion read of your biopsy slides done by an expert prostate pathologist to confirm findings?

    Do you know that your GS 3+3 biopsy tissue can be evaluated for genetic aggressive potential? One such test is The Oncotype DX Test

    "Helps You Choose the Best Prostate Cancer Treatment for You

    The Oncotype DX prostate cancer test is intended to be used for men recently diagnosed with early-stage prostate cancer. The test looks at the activity of certain genes in your tumor in order to provide personalized information about how aggressive your cancer is. All cancers are not the same. Your prostate cancer may be less aggressive or more favorable than what you would expect based on standard tests like Gleason Score or PSA alone. The information provided by the Oncotype DX prostate cancer test can help you and your doctor determine the most appropriate treatment options for you based on the biology of your individual cancer. The Oncotype DX test is performed on the tissue sample previously obtained from your most recent biopsy, and gives you an individualized result called a Genomic Prostate Score (GPS).The GPS has been shown to predict the likelihood, or the odds , that a patient’s prostate cancer will grow and spread."

    Be fully informed, then YOU decide on the best treatment for YOU.

    David

  • 1 Max. You have received great input. I had PBT in Korea 3 years ago. PSA was 7.5 and Gleason 3 +4 =7 so was intermediate risk, so had to have some treatment. Your characteristics suggest to me that you are an ideal candidate for active surveillance. Why put yourself under the real threat of incontinence and/or impotence when you don't need to? By the way, I was accepted for LL, but went to the National Cancer Centre in Seoul instead. I elected to have 28 sessions instead of normal 39. This required a higher daily dose. My PSA 37 months after treatment is 0.14. I still have a small rectal burn that bleeds very little, but everything else is good. (SpaceOAR hydrogel injection would have fixed that). Cost of treatment in Korea was 55% of LL cost. If you want to follow my story in detail look at An ABC of Prostate Cancer in 2015 on Amazon.

    To repeat, I would seriously consider going onto an active surveillance regime at this stage. With a change in your diet, etc. you could see your PCa diminish over time. What I know about PCa now would have seen me not go to have PBT or any other invasive treatment. I would have done the following:

    1. Clear my mind of stress, sub-conscious hang ups, etc. Attain Peace of Mind.

    2. Remove the few amalgam filling in my teeth

    3. Drink only filtered water

    4. Remove all sugars, breads, red meat and processed foods from my diet. Replace them with plenty of greens, fruits, nuts and supplements (Vit D; Magnesium; Vit C; green tea; selenium; omega 3 and others)

    5. Get my body pH to 7.3

    6. Exercise vigorously three times a week

    7. Detoxify the body various ways (coffee enemas, etc.)

    8. A suitable natural treatment protocol such as the Budwig diet.

    The above has seen my brother's metastatic castration resistant PCa regress with his PSA dropping in 8 weeks from PSA 20 to 6.4 last week. His other blood chemistry has also improved markedly.(Creatinine function from dangerous 175 down to normal 105)