Recurring Prostate Cancer After Failed Surgery and Radiation Treatment

To Everyone

I have decided to start a new thread and see where it goes. I know that there are some excellent recent individual threads that address recurring prostate cancer (PC), but they are interspersed with many wonderful heartfelt personal messages making it more difficult to get to the treatment facts. I would like this thread to contain only hard hitting facts from personal experiences and reliable research.

I am motivated to do this based on the number of recent posts from members who have experienced recurring cancer. This is a fate that any of us with PC could face in the future and it breaks my heart to read these stories. I hope that this thread will ultimately present some hard evidence of treatment options that are available to patients experiencing recurring PC that they may not be aware of.

I have a great concern that some patients may not be getting the best advice from their doctors as to all of the possible treatments available to them that could be life saving. Also, this website is a great resource to those that are not yet members. Often they join after reading some of the invaluable information that we post here from our personal experiences.

The key to a potential cure and hopefully avoiding recurring cancer after treatment is getting some form of treatment as early as possible (i.e., as soon after diagnosis as possible). Watchful waiting is a fool's game!

Recurring PC After Surgery

I believe there are cases where some patients can get radiation treatment alone or combined with hormone treatment, even if they are in a more advanced stage of recurring cancer. Hormone treatment will slow down the cancer, but will not cure it. Therefore, in order to potentially cure PC if it recurs after surgery, the only real hope is some form of radiation treatment. I implore everyone who is in this situation, to leave no stone unturned in getting as many opinions from the top PC medical institutions and doctors in the U.S. It ultimately could be the difference between surviving and not surviving this dreaded disease.

From my research, I believe there is evidence that some patients treated with radiation (rather than surgury as their initial treatment of choice) could prevent recurring cancer because surgery might miss or be unable to remove all existing cancer in the margins surrounding the prostate. Therefore, there may be some advantage to radiation over surgery depending on the circumstances (e.g., age and early stage of PC). Keep in mind that the percentage of PC patients who have recurring PC sometime after surgery is not insignificant. "According to the American Cancer Society, 40 percent of men have local recurrence of the disease after surgery, and 11 percent are at high-risk of the recurrent disease spreading to other organs."

I had my appointments with my cancer team today - surgeon, radilogist, oncologist, sexual function specialists.  Nothing decided today - another PSA test in three months, and then return to visit the surgeon.  For my stage - t3a and Gleason 7 - and pathology report, there's about a 60/40 chance of reoccurance.  Thus, the decision, radiation soon, or wait until a reoccurance.  This seems to be just as controversial and confusing as selecting my original treatment.  A recently released study shows that early radiation will delay the reoccurance of PSA, but the incidence of advanced metastatis was insignificant.  For right now, it's time to just get healthy, and hope the PSA stays very low.

In discussion with the oncologist, she mentioned some interesting ongoing studies.  Taking selenium is one;  I've been taking a men's vitamin for awhile, but decided to add a 200 mcg selenium supplement - my brother has really pushed that.  Another actually deals with pomegranete juice.  I bought some a couple of weeks ago, but may drink a bit more - tastes bad, but not so bad with lemonaide, however, it's expensive.  She also mentioned that a study of chemotherapy has just ended, with the results due back in a few years.  It makes sense, since any cancer cells still there are not readily locatable.

All in all, while things look good for me now, there very well be more decisions in the future.  Now it's time to keep up the research and pray/hope that my PSA stays down.  Who knows what kind of treatment will be around the corner.  Keep the information coming.

I was just reading in a newsletter I get following my Proton treatment. They state that Loma Linda is having success with Salvage Radiation following failed surgery. Another option to consider.

Hi Dave,
I recently had asuccesful robotic prostatectomy and am now focused on threat of recurrence. Your posting is interesting, especially the risk factors of time of recurrence, doubling time, etc. Could you tell me what is the threshhold of measuring doubling time. In other words, my recent PSA was <.01. If it should rise to 0.02, is that a doubling, or does it have to be higher before you start measuring doubling time.

Thanks,
Thoughtful

Thoughtful

You have to remember that ultra sensitive PSA tests are very touchy things.  My .01 may be .03 tomorrow, and .02 in a few days.  What one of my doctors mentioned yesterday, was to look if it rose to .05, and that would be significant.  A lot of the information I've read says that reoccurance is when it reaches .2   The main thing is not to get upset if a 0 goes to .01, etc...

B&B's World

What a tremendous posting you made!  I concur 1000% with what you say.  The power of positive thinking and positive living habits can be so beneficial to good health and good body chemistry (i.e., preventive medicine).  It looks like your husband is doing great soon after surgery, especially having to also endure two hernia repairs. Getting PC at a much younger age is especially tough and I love to hear success stories like this. Best of luck to both of you. 

Dave 

THIS IS AN IMPORTANT ARTICLE FOR THOSE ON HORMONE TREATMENT FOR PC

Quoted from Cancer Compass Newletter - Weekly Update for the week of 02/28/07 - For full article go to this website:

http://www.cancercompass.com/cancer-news/1,12239,00.htm?c=1003:5:1:2

"Breast Cancer Drug (Toremifene) Could Help Prostate Patients

A breast cancer drug could help men with prostate cancer avoid some dangerous side effects of treatment, a study shows. Toremifene may help protect men from heart disease and bone fractures, according to an interim analysis of 200 men in a trial of 1,392 patients. about one-third of the 2 million Americans with prostate cancer are treated with a therapy that blocks testosterone, which can feed tumors, says Matthew Smith, associate professor at Massachusetts General Hospital Cancer Center. Hormone-deprivation therapy is a mainstay of treatment for men in advanced stages of the disease and is sometimes given to men with early tumors as well, Smith says. He presented his research here Friday at the Prostate Cancer Symposium. The therapy doesn't cure cancer, but it can slow it down and ease pain. Doctors have grown concerned about the therapy's side effects, however. The treatments make men put on weight, gain fat and lose muscle, says Smith, the paper's lead author. In September, Smith published a paper showing that hormone deprivation also raises the risk of diabetes and heart disease. Another study presented Saturday confirmed those findings: Men over 65 on hormone-deprivation medications are more likely to die from heart disease. Toremifene, a selective estrogen receptor modulator similar to tamoxifen, is approved to treat advanced breast cancer. Doctors also are testing it as a way to prevent prostate cancer in men with precancerous growths. In this study, men with advanced cancer who took hormone-deprivation therapy were randomly assigned either toremifene or a sugar pill for two years. Patients who took toremifene gained bone density. Those on placebos lost bone."

Hi Thoughtful

Now that you have given us some statistics, I can now understand your concern about potential recurring PC. Let's hope and pray that this does not happen to you. Try not to think about it. All of us have to realize that there is a possibility of recurring PC after treatment. We all need to think positively after treatment. Good Luck!

Dave

Dave & All,

Could not find the Newsletter that mentioned the Proton Beam Salvage Treatments, but I did find 2 testimonials on the www.protonbob.com website. I'll paste them here and they also can be found on the website under Testimonials.

I'll start a new topic also as this might be missed.

David Leighton - Foresthill, California

When David Leighton’s radical prostatectomy failed, he chose Proton treatment to go after the cancer cells the surgery had missed. That was 5 years ago. Today things are looking great! Following David’s brief testimonial, he relates an inspirational story about his brave friend, “TC.”

Proud to be aboard the Brotherhood. This is an outstanding program. I am a solid believer in the "Proton," and your organization is right on track getting the message out to all those in need. Keep up the good work! Early detection and Proton treatment is the way to go!

10-17-95, the prostate biopsy came back hot in the upper left quadrant of the prostate.

12-12-95. my prostate was removed.

Two years later, the PSA began to climb again.

11-20-97, ProstaScint - UCLA - indicated cancer in the prostrate bed.

1-26-98, City of Hope, consulted with Dr. Wawachi regarding regular or Proton radiation. PSA 7.

4-98, Started Proton radiation - Proton all the way.

Completed Proton, 2nd week of June 98.

So far, PSA is Non Detectable, as of Feb. 2003.

Had no radiation side effects, whatsoever.

That's my history.

Thanks so much, Bob for having me aboard. Looking forward to communicating with all members!

Testimonial 2

Steven Hodgdon - Hatley, WI

Like many of our members, Steve’s initial treatment for prostate cancer was surgery. When his cancer returned, he chose proton therapy for salvage treatment.

Following is an email sent to me by Steven Hodgdon, a former surgery patient whose cancer had returned. He chose proton therapy at Loma Linda for salvage treatment.

Hello Bob,

I just finished reading the Proton Bob newsletter from June where you were speaking at Loma Linda's Wed. meeting. I was a post prostate surgery guest at Loma Linda starting in January 2006 and finishing up there on March 10th.

Four years after having my prostate removed my psa began to climb and when it reached 0.20 my urologist advised traditional radiation as the next step. I wasn't too keen on getting that done after hearing about the possible damage to good tissues that conventional radiation can have. After pressing my oncology radiation doctor about other treatments he then told me about proton radiation treatment at Loma Linda and mentioned that he had graduated from there some time ago and that his son now is going to Loma Linda. He said that if he were me and could afford the time and expenses, he would go to Loma Linda. After this fine recommendation, and some research and correspondence with Loma Linda the decision was made to go.

The experience as others have testified to, is almost indescribable. Being treated as a guest and with respect at every turn, the opportunity to socialize with other guests, and the professionalism by all the staff is overwhelming. My wife and I came home with many new friends and a very positive outlook on my recovery. Dr. Rossi is indeed an expert in proton treatments and is confident in his practice.

I had my first follow-up treatment after two months (standard for post surgery treatment), and am so elated to say that my PSA was non-detectable. Also, my friend Rex from N.M. who had post-surgery proton treatment at the same time, reported to me that he had the same results.

So anyone out there with ‘returning’ prostate cancer absolutely needs to check out Loma Linda. Bob, when I first contacted you to join your group I was surprised to get a personal e-mail back from you outlining the success of other Proton Bob members who had post-sugery proton treatment. That little note of yours really helped build up my hopes. Thank you. I hope this makes your testimonial pages so that others having similar cases will know that proton treatments for post-surgery returning prostate cancer really are effective. Best Regards, Steven Hodgdon, Hatley, WI. Keep up the great work!”

Email: [email protected]

 
Hope this helps.

Ken

Hi Dave,

Hope your treatment is going well with little side effects.

You are correct as far as the seriousness of the reoccurence. With Protons the area would have to be a Targetable area. They do both Proton and Photon if there is any question about the extent of the spread.

Each Patient is unique and a consultation with a knowledgeable Urologist would be the best way to go. Knowledgeable is the Key Word. Some are not even aware of all the possibilities. Sad to say.

Time is the most important issue with a reoccurence. Catching it quickly is the key ,whether it is Salvage Treatment or your 1st treatment.

Ken

Dear Susan

At long last I am hearing from you!  I think of you and Don often and have been wondering what progress you and Don have been making in pursuing the continuing treatment needed for him because of the most unfortunate failed surgery.  I am glad to hear that you are communicating with Loma Linda--it gives you hope.  Not being a doctor, I have no idea about the cancer in the distant nodes.  I don't know how often that happens.  Usually the nodes in the pelvic area are removed at the time of prostate surgery.  If they can identify where those distant nodes are, why couldn't they be removed surgically.  In many other types of cancer operations, it is common to remove nodes elsewhere in the body.  Has this possibility been discussed with any of your doctors?  I would hope that Don would agree to any further treatment that gives him a good chance of wiping out the remaining cancer.  I know it has not been easy for both of you, but don't give up the fight.  Please keep us informed of the progress you are making.  What a wonderful wife Don has!  Fighting for her man all the way! God Bless!

Dave  

Dave - still waiting to hear...they said 3 days. I'm sitting on the phone and it's not comfortable.

Update: yesterday afternoon late (I'm in FL - Loma Linda in CA) got a call from LL. Spoke to Mila - she asked Don some questions regarding his present side effects from the Lupron & general health. She said the doctor will review his records next (I guess she Pre-reviews them) and we will be getting a call.

Update: Maybe we'll hear Monday

Post Edited (myman) : 3/30/2007 3:41:25 PM (GMT-6)

Susan:

So sorry that proton will not be an option you can use, but have no doubt you will leave no rock unturned until you find something. 

Best to you both.

Dutch