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Making choices: surgery or radiation for aggressive prostate cancer diagnosis

wwdlink
Posts: 9
Joined: Jun 2013

I am 71 years old, very active physically (my wife and I are training to run our first half marathon within the year). We recently moved to Austin Texas.

In 2005 I was diagnosed with uveal/choroid melanoma (eye cancer) and received proton treatment.

Until several years ago my PSA was stable, under 1, then it rose to 1.88. After a spike in June '12 (to 4.88) my doctor monitored it. After our move my psa rose a bit again to 5.3, and I saw a urologist, who recommended a biopsy. I was then diagnosed with an 'aggressive' prostate cancer three weeks ago. Six cores from right side of prostate: one seven, two eights, three nines (100%); six on left - three sevens, one eight, two benign prostatic glands and stroma.

Between my diagnosis and follow-up meeting with the urologist I began gathering as much information as I could from the various online sources, including this discussion board. Because of my previous history with cancer, I met with an oncologist prior to meeting with my urologist. He was convinced the cancer had not spread, that while my  Gleason scores were high, they didn't start with 5s. And wasn't concerned about the possibility of uveal melanoma metastasizing, and demonstrated no interest in discussing recent studies on that issue.

When I met with urologist, he expressed his opinion about the seriousness of my Gleason score, answered every question I had at the time, and explained why he would recommend radical retropubic prostatectomy. Based on what I've read in many messages here and other places I told him I wanted a second opinion on the biopsies. He didn't balk, but did tell us that the pathologist they use is a specialist in urology. He disagreed with the oncologist's dismissal regarding the possibility of uveal metastases. He sent me to a radiation oncologist, and during that lengthy and informative conversation, he explained why he would use IGRT to treat my prostate cancer.

So far my bone scan, pelvic MRI, CAT scan of abdomen and pelvic area are clear. Because any melanoma metastases would 'trump the prostate cancer' the radiation oncologist ordered a brain MRI. I am meeting with an eye specialist with expertise with eye cancer on Monday, and my urologist on Wednesday.

After reading through quite a few messages on this board, as well as others, and numerous websites, I respect how difficult the decision-making process must have been for each guy going through this journey. That's why I'm here. I'm not asking for you to make my decision for me, I am looking for input on how you made the decision between radiation and surgery.

Regarding second opinions for surgery/radiation treatment. If our insurance coverage allows, I would return to MD Anderson for a Multidisciplinary Prostate
Cancer Clinic consultation with a Urologist and Radiation Oncologist. They will recommend any additional lab/diagnostic testing and provide a treatment recommendation summary - whether you decide to go with them for treatment, or return to your own medical providers. Has anyone used this process? Thoughts?

Finally, my brother-in-law was diagnosed with advanced prostate cancer last fall, had spread to the bones and I believe other locations. He stated there weren't a lot of options available, didn't like the ones that were, and decided to seek alternative treatment. He went to Issels in California, and received Dendritic vaccine (subcutaneous) and LAK Lymphotic Activated Killers (IV)in Mexico. Reportedly doing well. I am not considering following in his choices, however am interested if others have investigated this type of treatment.

Thanks for feedback.

 

 

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

 

WWD

I think that your experience as a survivor of cancer will help your judgements when dealing with the facts of PCa. The first step should be in getting proper diagnosis. This can be done by choosing modern facilities with the latest testing equipment and specialized team of physicians.
Your choice in MD Anderson and a Multidisciplinary PCa consultation seems to be a good start, but doctors need to have at hand the tools that can facilitate their judgements too.

I wonder if your urologist has attribuited any Clinical Stage to your case. If the results you posted are confirmed, your case may be more advanced than what has been informed. Gleason score 9 with low levels of PSA but fast doubling times in a setting of 10 out 0f 12 positive cores is for high risk of extra-capsular extensions which could be related to micro metastases that cannot be detected in usual CT or MRI. In such scenario your “clean” image study results could be false negatives. In fact this happens quite often in the diagnosis of a clinical stage of a Gs9 patient.

The above consideration is important because it narrows your choice in treatments. Surgery would not be the best choice to provide cure and several methods and protocols to deliver radiotherapy would have lesser probability of success.

I am not a doctor but a long time patient of PCa. My lay opinion from the info you shared here compared with the evidence of past similar cases, is that the only good “news” goes to the negative bone scan. However, even these X-ray machines are limited in detection of bone deterioration of tiny spots. To have the best you need to look for tests done with better contrast agents (such as C11, F18, etc) and tesla 3 MRIs and PET scans. Avoiding such test will lead your doctors to recommend treatments based on guessing.

I recommend you to continue reading about the prostate cancer diagnosis and treatments, and their risks and side effects. Many outcomes become permanent prejudicing much your present quality of life.
I hope that the intricate “alleys” in the diagnosis of your PCa status does not interfere with your wish for running a marathon. I see both facts as much as important.

 

Best wishes in your journey.

Welcome to the board.

VGama  Wink

 

wwdlink
Posts: 9
Joined: Jun 2013

Thanks for responding. I will be going to MD Anderson's multidisciplinary prostate clinic the first week of July once my insurance changes from its current hmo status. I tried again today to order a second opinion of the pathology report. That didn't go well, so suggestions on where to ask it be sent welcomed.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

WW,

I'm sorry to read about your diagnosis.  Your post highlights the difficulties men have in dealing with a prostate cancer diagnoss and sorting through conflicting recommendations from experts.  Typically, specialists tend to try to build a case for treatment with their own specialty as the only way to treat your cancer.  They obviously all can't be right.  Insurance compounds the problem by limiting a patient's ability to seek other opinions.

When any doctor discourages you from getting a second opinion, even on a pathology report, my personal opinion is that you should run out of the office as fast as you would start out on your half marathon!  I mean, seriously?  

Men with advanced cancers have even a more difficult course to follow in choosing treatment as the urgency to do something is quite real and necessary.  

Despite the negative bone scans you've had, advance cancers are extremely likely to have spread beyond the prostate although it may still only be at the microscopic level.  Removing the porstate in these types of cases does nothing to curb the growth of prostate cancer elsewhere in the body and the potential impact that the adverse side effects could have on the quality of your life are significant, particularly for men over 70.  Surgery on advanced cancers also increase the risk of cutting across margins, which can also increase the risk of spreading the cancer.  In my recollection of reading many of the studies and hundreds of posts from men in similar situations, it seems to me that advanced cancers treated with surgery almost ALWAYS end up with additional radiation and hormone therapy treatments.

Why not just do radiation to begine with?  Modern radiation, including IGRT, can radiate the entire prostate and surrounding areas.  Side effects are generally less severe than surgery.

I hope you get sound advice from the experts you are visiting and that your insurance plan works out.

Best of luck.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Ditto on MDACC. Keeping my PC under control since 04/2010.

BLUEpac6
Posts: 31
Joined: Jun 2012

I will try to keep this brief as how I came to my decesion.In jan.2009 after having blood work done I was informed my psa was 110.Biopsy showed gleason score 9 and told agressive carcnoma and probally out of prostrate.The bone scan they did was negative.I am in longview texas and went to alocal robotic surgron and he said he would not touch me as it was out of prostrate.The local oncologist was setting me up to have seeds and radiation both and I would have to have a hormone shot and wait 90 days for treatment.In the mean time I wanted a second opinion so I went cancer center of america in tulsa and they said same thing surgery was to dangerous but did a cat scan and mri which were neg. excecept for a hump protruding from proatratre.In the mean time a friend of mine talking to his old urologist about me called from his office and said prostrae has to be removed as if you have radiation and cancer returns there is not chance of cure left.He put me intouch with Dr. seath Lerner Baylor clinic Houston.In aug 2009 he did radical surgery.My psa did start torise ayear later and ijuly 2011 had salvage radiation and as of may 2o13 my psa is less than .003. that is my story hope you do fine

marvinlzinn
Posts: 1
Joined: Jul 2013

I am responding to a message because of the title about choices.

For 30 years I kept track of Prostate size (PSA test). With Saw Palmetto, I was able to get the test down from 4 to 3, and a few years ago from 12 to 5. This is the most common male problem, and I expected cancer, which I confirmed with a test. Most cancer is not caused by food, but chemicals or radiation. But I refused doctor’s advice about surgery. Whether I live longer is irrelevant.

  Each morning I make carrot juice (beta-carotene) to which I add graviola (used in Brazil). With meals I add turmeric and normal supplements including vitamin B12 because I rarely eat meat. These have completely cured cancer in hundreds of people. No, it does not work for everyone - only about 80%, which is far better than what doctors are recommending! But with these herbs and supplements, the symptoms I had for more than a year ended in three weeks. With a trial (three times), I found that more than a little sugar and/or Dairy product will make the cancer symptoms return, so those I avoid. I continue to test different foods, and suspect peanut butter and caffine, but not yet proven.

marvin




 

wwdlink
Posts: 9
Joined: Jun 2013

Thank you Marvin for your input, and I am glad the things you are doing are helping. I, too, have been researching what diet, herbs, supplements can do to help combat cancer and have altered my diet even more than I had done prior to the diagnosis. I hope what you are doing continues its work in your body.

Samsungtech1
Posts: 350
Joined: Jan 2011

I have metastic prostate cancer, not doing well right now, also have Melanoma.  Been cun on three times for this.  I am more afraid of prostate cancer than I have ever been of Melonoma.  Prostate cancer is like swimming in the ocean with sharks.  They can attack, but they just. Take the easy pieces.  After time if comes to collect what is left.  Melanoma just hits and keeps on taking pieces. I would give it to prostate cancer.

Death is death.  It has been coming for all of us since we were born.  Now that we are older we do not like it.  Death is still coming.  Enjoy what you have left.  No one wants to be here, but if you are find something to njoy.

Mike

yankeefan
Posts: 69
Joined: Mar 2013

Sorry to read about your recent diagnosis. At this point you should look for the best urologist and oncologist you can find. they have dealt with cases like this and can give you the best advice. I know it's too late in your case and i'm not trying to make you feel bad, but if there is a teaching moment in your story, for other men out there, it is not to get your psa tested and analyzed by your regular GP but by a urologist, which you should see regularly, i.e. at least annually. Can't help but think a urologist would have noted the acceleration of the psa results way before they got to 5.3.  My guess is they would have started testing you every 3 months after the rise to 1.88. that would have led to a decision to biopsey earlier and the detection of your cancer before it was as advanced. notwithstanding, if your urologist believes that there is any chance the cancer is still contained within your prostate then I wouldn't delay choosing a treatment. it's great that you are in such good shape. 71 isn't "old" like it used to be. again, sorry for your diagnosis, and all the best.

wwdlink
Posts: 9
Joined: Jun 2013

No, your comment about the teaching moment didn't make me feel bad... had we not been in the middle of one of our adult children's life-changing crises, I would probably have pursued a urologist myself... prior to our move... because I imagine my wife would have been nudging me in that direction, even if the gp didn't. 'Treatment' officially started yesterday with my first injection. Within three months I'll be entering proton treatment. I've altered my diet even further, following the UCSF 'plant' diet - which wasn't a completely drastic change from how I was eating, but the studies supporting the change - and stories here and elsewhere of the differences - helped me make the decision to forego my occasional bratwursts (I AM from Wisconsin). Thank you for your feedback. And I hope you do well too.

elpasorudy's picture
elpasorudy
Posts: 78
Joined: Jan 2013

I was diagnosed with prostate cancer in December of 2005: 3 positive tissue samples, two suspicious. Gleanson score was 6, PSA 5.45. No symptoms. I had planned to go wtih radiation, but a doctor at the Cleveland Clinic said that was not a good option because the cancer was on both lobes. My regular urologist had recommended surgery, but he did not do robotic or laparoscopic procedures. Went to the Moffitt Cancer Center in Tampa for a second opinion, and Dr. Pow-Sang of Moffitt  took out my prostate laparoscopically in March of 2006. The pathology report increased my Gleason score to 7 (3 +4). Today, my PSA is undectable. Although I had nerve-sparing surgery, I experience erectile dysfunction. Viagara helps. I also have mild incontinence, most of that from bladder neck surgery in 2010. Scar tissue from the cancer surgery had started to close the bladder opening. I'm OK with my decision for surgery. The outcome wasn't perfect, but I don't have prostate cancer. I spent a lot of time researching my treatment options and talking to 6-7 doctors ... My father Tom (radiation), brother Jim (radioactive seeds) and brother Greg (surgery) all were/are prostate cancer survivors. Tom died at the age of 88, 30 years after his cancer diagnosis, from Alzheimer's disease. If you have any sons or brothers, make sure they get regular PSA tests. Their chances of getting prostate cancer are doubled due to your cancer ... I wish you good luck ... There's a great website (You Are Not Alone), which carries first hand stories of prostate cancer patients and their treatments. The web address is yananow.org

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