Advanced Prostate Cancer
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Aggressive Prostate Cancer and an angry patient

My brother in law has a Gleason Score of 9. He was told at Dana Farber in Boston that he has aggressive prostrate cancer but it has not spread. It is close to though. They want to treat him with hormones (ADT). the hormones will stop the male hormones in the prostrate from spreading the cancer cells. He is upset. He wants it removed. He is very very angry today. Any advice I can pass on to him?

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The adt will shrink the cancer and hopefully make it easier to remove in the furure, Dana is a center of excellence, My advice would be to follow the advice of the experts

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Your reasoning makes sense Dan. I'd still get a 2nd opinion though.

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I think so too. There are plenty of good cancer treatment centers in the Boston area. Thanks

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Have your brother-in-law get a 2nd opinion. If it hasn't spread, then I would assume some Urologists would opt for RP. I had Gleason 8 (extracapsular extension) and was told 2yrs of Rad and ADT or RP. It was a no-brainer- RP. So far so good (but it's early to celebrate)

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Immediate ADT does not preclude surgery at a later date - or radiation.

ADT is not a definitive solution, because failure rates are high at about 2 years. Can't believe this was the only treatment offerred.

Aggressive PCa calls for aggressive treatment. As I reported in a recent post, survival rates are higher for prostatectomy [RP] over radiation.

How is his health? Does he have other problems that might make a RP unsafe?

-Patrick

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The docs said four months of hormones which include a monthly shot and daily pills. Then he will get radiation. This cancer is contained in prostrate but pushing to get out. They did the bone scan and it was clean. Don't want to operate due to the intensity of it. Like all hell could break lose so they want to shrink it. I wasn't there. Getting info from sis in law. My bro in law is freaking out about the hormones and the side effects. Poor guy.

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Thanks for any and all information or life experience anyone can offer if you are n the hormone and the ADT

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I would highly recommend a second opinion before radiation treatments. After the radiation card is used it will limit his future options. Save that for down the road if the surgery fails. He may get several years out of the prostatectomy or possibly cured. If it does come back then use radiation. Save every option he can until the next is needed. He may just buy enough time until a breakthrough cure for this dreaded disease is found.

Ron

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I have advanced prostate cancer which has spread throughout my skeleton. I was diagnosed nearly four years ago. No surgery but Zoladex injections every 3 months and Xytiga (Abiraterone) and prednisolone daily. LOTS of exercise and high vegetable and fruit diet. Absolutely NO dairy. Red meat about every 4 to 6 weeks as a treat otherwise fish and chicken.

Originally PSA was 620, dropped initially to 0.02 and has risen slowly since. Last Monday was 16.

Everything completely normal and life excellent EXCEPT!

My best trouser friend has shrunk physically and prefers to sleep rather than play games! Very sad! But I am alive, so your brother in law must decide what in his life is most important, living or romantic fun. Obviously his wife must be involved in any decision he makes.

Niall

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Should have mentioned also had Intravenous Radium 223.

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Trousers snakes are insignificant to your life. Glad you are alive and in good spirits. Love and prayers your way. Thanks for writing.

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This is agressiv treatment for an agressive cancer. I had the same but with a lower gleson. I don't know his health but for me increased my exercise workouts with a vengence to ward off the side effects of hormon therapy..Do what you can tolerate. Good luck. Rocco

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I sympathize with him for his shocked reaction. But I urge him to calm down and take the doctors advice. We have gone through it for seven years and are much wiser. All he should do is to keep reading forum topics and he will know better. I nearly had a fight with my Oncologist yesterday about not receiving a follow-up treatment and be allowed my PSA count to rise. But I am wiser today after reviewing the conversation. You will be alright if you use your emotions to aid your recovery. We all pass this stage

Keep healthy and remain blessed

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shrink it and remove it,

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Mayo Clinic in Rochester Minnesota. They will want to do their own scans and make their own judgement based on what they find. Depending on his health and age a prostatectomy is a given.

It is possible ADT will be given first to get his PSA down to a lower point. A PSA of .5 or lower typically yields a better result when a localized treatment is administered.

Ron

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Often they put you on hormonal therapy to shrink the size of the tumer before surgery. When you said that it had not spread, is that based on MRI, CT or bone scans?

He is a good candidate for the Stampede or Latitude regiment. They found that those with advanced cancer have better results using a mixture of Lupron and Zytiga (two hormonal therapies) than just Lupron.

There is a question to ask if he has surgery. When they do surgery they usually first take out pelvic lymph nodes and to an instant check to see if the cancer has spread (unfortunately a strong possibility with G 9). If it has, then quite often, if you do not state that you want to continue with the operation, they stop the surgery. Again, recent studies have shown positive outcomes with taking out the primary source of cancer even if it has spread.

Finally, this sight is full of men with advanced cancer that are on hormonal therapy that are still enjoying life. Yes, his life will change, but not necessarily in a bad way.

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I know he has had a cat and bone scan. The prostrate is still containing thebkesion but is pushing. They won't operate because it could spread quickly if they do. Don't know all the details. Ur the hormone therapy freaked him out. He is not one to ask a lot of questions. You are very on top of this.

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We thought my Gleason 9 was organ contained back in 2013. So I had RP which found a mess: extracapsular extension, bilateral seminal vehicle invasion, positive margin but no lymph node invasion. Gl9 is a bitch and must be treated aggressively. I've had 3 recurrences since , all treated with ADT and RT. ADT is not as bad as I thought it would be because my RO subscribed mitigating treatments for it. By far the most important is vigorous daily exercise: aerobic, resistance and core. You don't have to be a victim!!!

Bob

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Your brother's PCa is the most aggressive type being GS 9. I fully agree with pjoshea13 ( Patrick ). All types of dangerous PCa cells are concentrated in the prostate gland and its removal has a very significant benefit on survival and the residual cancer cells wherever they are hiding become a lesser burden in managing the decease. So hitting the cancer as hard as possible right from the start would be the best strategy.

For my organ contained PCa of GS9 I took immediate action with the best treatments available to blow the cancer as hard as possible because my main goal was to live and not die. My treatment regimen was Radical Prostatectomy ( RP ) + IMRT ( Radiaation ) + ADT ( Zoladex continuously for 2 years ). I have achieved complete remission with undetectable PSA and presently do not take any other treatment. Proper diet ( heart / cancer healthy ), vitamins/supplements ( widely accepted as useful ) and regular exercises help my whole body system to fight against the cancer whilst the cancer drugs do their part. All the vital blood markers including most importantly PSA are reviewed every 3 months.

If you look at all the replies you receive from our group objectively, then you can use such vital information when you discuss the appropriate treatment options for your brother.

Sisira

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What is your age? You sound like a take charge CEO. RICK IS PASSIVE AND DISMAL. what do I do to motivate a 72 year old with a death wish?

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My husband is 82. Gleason 9 - stage 4 - neck of bladder-seminal vessels- 4 lymph nodes positive. May 2012 RP- PSA about 7.9. Remains on Eligard -and starting a new KPT-8602 trial at vanderbilt ingram cancer clinic. Point being-my husband was 77 at begining and until August of 2016 played golf - gardened- active & felt well. Taken . Eligard-Zitiga/xtandi/radium 223. Run the gamit & still has a pretty good quality of life of life. Enjoys! 72 DO NOT GIVE UP - FIGHT THE GOOD FIGHT!!

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By shrinking the prostate first with ADT and/or chemo, the surgery or radiation will be easier to target. Once it shrinks it will be easier to define the margins of the cancer itself, and be easier to remove via surgery or treat with radiation with less ancilliary damage. I would guess his prostate is bigger than 60 mg, they can not use DaVinci robotic assist system to remove it. You also have to consider the side effects of a radical prostectomy, loss of sexual function and possible urinary bladder control issues. When the cancer is this large, they cut the urinary tract right at the urinary spincter and then restitch it back together after the diseased part of the tract is removed. This takes time to heal and a some number of patients have difficulty with regaining full bladder control. For example, if it is pressing on the rectum or bladder, it is better to get it to shrink and pull away from rectum or bladder, then to remove parts of those organs to ensure a safety margin.

As far as the hormones, I was Lupron (3 month injection) for 52 months. Yes, no erections, yes I had hot flashes (also due to enzalutimide), yes I have some gynecomastia. As a side note four months of ADT will not cause any of these side effects to any appreciable amount, except for the loss of erection after 3 or 4 months.

My cancer was a Gleason 9, it was already metastasized to my pelvis and spine. Surgery, radiation, and brachytherapy were not options. I have been alive for 5 years, now have liver mets, I am in chemo (round 4) now til the end, the chemo is working at this point. I have been thru three clinical trials, 2 failures, one success (enzalutimide) for 32 months. I also had radiation for spinal pain and vertebral collapse.

I understand why your brother-in-law is angry, we were all angry at first. Your brother-in-law is just at the very beginning of his journey with PCa, we all wish him good luck and hope he has a successful remission within the next 12 months. I also suggest he educate himself, there is a tremendous amount of information on the internet, but you still have to learn to separate the pertinent from the trivial. We try to assist others with that on this website.

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I would recommend a second opinion with Dr David Samadi In New York City , Just A Short Trip Away . I have seen where he will provide a second opinion without cost but I would confirm that . If there are no contraindications to the surgery then I would recommend the prostatectomy .I'm a little urprised an MD At Dana Farber Did Not recommend this so there might be a reason ; you might want to clarify . Good luck!

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I also would highly recommend Dr. Samadi in New York. I was a Gleason 10 with attachment to my rectum, spread to seminal vesicles, no lymph node involvement or bone metastisis. he successfully peeled the rectum attachment off without perforating anything, did the RP, pelvic lymph node dissection (removal) and now has me on the 3 month interval Lupron injections (had third one a week ago and yes I experience some of the typical side effects) as well as daily oral casodex. (PSA at time of RP was 16, after surgery 5.65, after just casodex for five weeks at 3.69, after first Lupron injection 0.49, then more recently at 0.99 which caused Dr Samadi to put me back on casodex with lupron) I am waiting to see if i can get full continence back and then will have my 40 radiation treatments. I can't say enough for his skills and his management of my PCa. I might add I travel from ND to New York for my treatments and injections, distance is no object when you want to beat cancer and live.

David

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Hi David. Here's hoping you can time one of your NYC trips with one of our groups. Malecare.org/nyc

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Good morning Darryl! And thanks! I will be back in October for my next injection and will try to work that in. God knows I have lots of trips to NY in the next few years! One of them should work out.

David

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No matter the eventually course with primary treatment, the first step is an injection of Lupron or Eligard in the U.S. Wisecand prudent until the decision making process takes place. His Gleason is high and is inductive of future metastatic disease.

If I was asked for advice, I would start chemo to kill as many bastards as you can while the tumor burden is low and his body is strong. There are existing studies on adjunctive chemo with primary treatment. Frankly, his numbers indicate that he should be very aggressive in treatment. I wish him well.

Gourd Dancer

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I forgot..., something he should have a talk about with his Medical Oncologist who specializes in Prostate Cancer, and he needs one rather than an Urologist, is the likely hood of micro-metastates. Or, the unseen cancer cells already floating in his vascular and lymphatic network looking for a place to land and grow. Hence the chemo.....

Gourd Dancer

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dbeaudet,

Your original posting was incomplete in that you did not mention that Dana-Farber was planning radiation treatment for your brother-in-law. As a result, I think that a lot of the responses you received assumed that the ONLY treatment Dana-Farber was proposing was hormone therapy and so they recommended second opinions and other treatments.

My personal opinions are:

1) The treatment Dana-Farber is proposing is the best one. It's the best hope to save your brother-in-law's life. Knowing that he has an aggressive cancer and that there's a good chance of it already having penetrated the prostate gland capsule wall, D-F will almost certainly radiate the area around the prostate as well as the gland itself. I personally think this is more likely to cure the cancer than surgery, which will only treat the gland and not the surrounding tissue.

2) D-F is one of the very best cancer treatment research and treatment centers in the world. There are some other excellent hospitals but I don't think there are any that are better. Your B-I-L is very lucky to be getting treatment there.

3) Your brother-in-law has developed a deadly disease. It WILL KILL HIM if he doesn't get it treated. There is a chance that the treatment D-F has proposed will cure him. It's not guaranteed. There is a fair chance that the cancer has already escaped the prostate but is too small to be detectable. D-F's proposal to use ADT has a chance of killing any tumor cells wandering through the bloodstream before they establish metastases. It's a good treatment. It will also weaken the tumor cells in and around the prostate gland, making it more likely that radiation will kill them. If I were in your brother-in-law's shoes I would call D-F TODAY(!) and ask for the ADT drugs.

It's time to face some hard facts. His life has changed. If he thinks the side effects of ADT are unacceptable, wait until he experiences the symptoms of cancer. What he needs to do now is go to the best treatment center (which he is already doing), take their advice (which he hasn't yet done), and face the future with a determination to make the best of a bad situation.

I wish him the best of luck.

Alan

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As Dan mentioned, the ADT will shrink the tumor in the prostate. My prostate went from 34 to 27 after a couple of months. ADT is standard for preparing for radiation treatment. If conventional surgery is considered too risky then radiation is usually the next option. You might want to research HIFU also. I chose that over radiation. I did have to pay out of pocket since Medicare hasn't 'coded' it yet so insurance uses that as an excuse not to pay for it. Oh, I was considered a very poor candidate for RP surgery after TURP (roto-rooter) surgery for an enlarged prostate 10 years prior to my PC diagnosis.

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Is your brother-in-law aware of the online courses now offered by PCa International for patients starting on ADT? We designed the course to help both patients starting on ADT and their partners learn about ADT side effects and ways to reduce the overall burden from that treatment. The next class is scheduled for a week from Friday. He might want to contact Jan Manarite there for more info.

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Thank you everyone for your wonderful advice. I have sorted it out and sent it all to Rick. Hopefully he will get a second opinion and learn more about the hormone therapy. He is terrified of the side effects. Radiation will begin in about four months. We have our fingers crossed.

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Some research indicates that radiating the breast area can help prevent gynecomastia due to ADT drugs. I wish now that I had insisted on that. An ounce of prevention and all that.

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You have lots of advice on technology and treatments. Let me just say that I had GS 10 and RP in March 2008. Messy margins but not in my lymph nodes. Radiation in 2009 when PSA returned. Stayed at undetectable for 3 years! In 2012 PSA began to rise slowly, and I watched it checking every 3 months while on clinical trial out of Hopkins until an annual cat scan detected growth in bladder wall confirmed as PC. That's when (in Dec 2014) I began continuous ADT with Casodex pill daily and Eligard 3-month shots. Undetectable PSA since then. Not as hard to tolerate as I feared. I still run a large int'l NGO communications team full time, travel, live my life to the fullest. Also, my wife has been at EVERY appointment and is my partner in this dreadful journey. I love my life, her, our family. Tell your bro-in-law to educate himself, calm down, find good doctors, get a second opinion if he's not sure, and take dealing with the disease a step at a time.

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Did he ask why that course of treatment? Once you process the shock, ask why they feel that is the appropriate treatment. They can not definitively say it hasn’t gotten out, only that scans indicate there is no INDICATION of cancer cells elsewhere. The ADT will shrink the prostate as others have said making surgery much easier. Maybe he did not get a clear explanation. Shock does that sometimes.

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