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Cancer: Prostate Message Board
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Old 02-14-2010, 08:14 PM   #1
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Gleason 9 (5+4 in three areas)

I have been reading several threads which have been so helpful, but were so long, I thought I should start another one. My husband has just been diagnosed with Stage 2 prostate cancer, Gleason score 9, which is so scary. His last PSA was 12.5 but had been at 15 during a previous test.

He is a complicated case. Six years ago, in 2003, he had rectal cancer, stage 111C and was treated with radiation and chemotherapy. He had a turp operation the following year as his large prostate and the effects of the bowel surgery had made it necessary for him to have a foley catheter to urinate.

Because of the turp, our urologist said it is difficult to stage the prostate cancer but he assured us (correctly, I wonder?) that the cancer was contained. He gave us options:

1. External beam radiation.I feel radiation is not going to be an option as the previous radiation has already damaged the bowel and we are currently awaiting information from the hospital in the UK where he had the radiation.
2. Brachytherapy
3. Hifu. I have read this is more appropriate for low to intermediate grades so would this even be an option? If it were, it would suit us fine as we live about five minutes walk away from the hospital in Nassau where it would be administered! The urologist said though he would prefer to keep this treatment as a reserve.
4. Hormone therapy of course. Would that be used along with all the above treatments? If that is the case, I feel we should start it now. The waiting and doing nothing is driving me crazy with fear.

Surgery is out of the question. My husband is 71 and, though in good health, having had the turp surgery, would not be a good candidate.

I must say the news was a shock, not only because he already had rectal cancer and I have lymphoma, but because ten years ago, his PSA went to 12 and it was just BPH so you can understand that we were hoping for similar results of this biopsy.

I see you have some great advisors on this board and look forward to some words of wisdom and, hopefully, encouragement.

Alison
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
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Old 02-16-2010, 01:30 PM   #2
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Re: Gleason 9 (5+4 in three areas)

I am sorry to hear about the diagnosis I am sure it came as a shock. I was diagnosed five years ago with Gleason 5+4 and stage 3. As you are aware the gleason is about as aggressive as you get with only a 5+5 being higher. That said five years later I feel no different than when I was diagnosed and just reached a PSA of<.01

There are somethings that I would have done differently had I known more. If you have not read Dr Myers book Beating Prostate Cancer (hormonal Therapy and Diet) or Strum's The empowered patients guide it would be worthwhile.

I am not sure about the expertise available Nassau but have no doubt that it better than what I had available on the island of Guam. Nevertheless I found that many Dr's tend to treat PC survivors the same whether there Gleason's are 3+3 or 5+4 and although I have no medical training my research has led me to believe this is wrong.

Today I think with My Gleason a much more aggressive path is necessary, Through this board I became aware of the books I mentioned above. After reading Dr Myers I felt much more positive. I was impressed enough to make the roughly twenty four hour trip to visit him for an opinion. He put me on triple blockade and my PSA is now <.01.

I always advise anyone who asks to get a second opinion. Given your husband's Gleason I would advise trying to get it from an oncologist who specializes in Prostate Cancer and if possible highly Aggressive Prostate Cancer. I would also be looking for someone who is a proponent of triple blockade. (Jim---IADT3 has some excellent posts on triple blockade)

Since I chose Dr Myers to visit and since I decided to enter into a long distance patient relationship with him I am obviously biased in favor of him and his clinic Virginia.

One last thing take what you read with a grain of salt. A lot of what you read on he net and elsewhere can leave you feeling very down given you husbands Gleason score. Actually so can talking to some doctors. Perhaps that is why I chose Dr Myers, his book gave me hope in spite of my Gleason and in after a personal visit I came away with an even more positive outlook.

My prayers go out to you both as you go through this bump in the road.

John

 
Old 02-17-2010, 04:52 AM   #3
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Re: Gleason 9 (5+4 in three areas)

Thank you so much for responding! I will order at least one of those books which sound helpful and I will also ask our urologist about triple blockade when we see him next week. It is great to hear you are doing so well after five years and with such a low PSA. I will keep you updated on the treatment plan when we know what it is.
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 02-22-2010, 10:56 AM   #4
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Re: Gleason 9 (5+4 in three areas)

GuamJohn,

Out of interest, when you started treatment with Dr Myers, was the triple blockade your only treatment, or did you also have radiation or chemo or surgery??
My father was recently diagnosed, gleason 10 stage 3 (seminal involvement), but clear bone and cat scans. He was on casodex then Lupron, thats been for the past couple of months. Recently had gold markers implanted to prepare for IMRT in another month.., but his pain has gotten significantly worse since the seeds were put in. Hoping it is from that, and not spreading already...

 
Old 02-22-2010, 02:35 PM   #5
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Re: Gleason 9 (5+4 in three areas)

Casodex or its generic is usually given before Lupron to reduce the effects of "Lupron Flare". This is the rise in PSA that can occur when Lupron is first given. If he remains on both that is referred to as double blockade. I was on double blockade before D Myers hawever was unable to get my PSA down to acceptable levels with just double blockade.

Some of the doctors I saw both here and in California treated me the same as there other patients with lower Gleasons. I think they are not informed of alternatives for very high Gleason patients. Many of us don't even know the questions to ask. i wished I had read Dr Myers book "Beating Prostate Cancer, and Strums A Primer on Prostate Cancer: The Empowered Patient's Guide in the beginning. I believe we have to take an active role in the decisions about our treatment and not rely solelu on the Dr's especially since many are not exposed to very many who have Gleason's in the 9-10 range.

I had a radical prostatectomy initially followed by radiation. As I was not aware of triple blockade that was not on the table. Had I been aware I would have moved on to it sooner. I found Dr Myers four years + after my original diagnosis.

I take it you are from Canada, I read on the board that Toronto Sunnybrook Regional Cancer Center's Dr. Laurence Klotz is a leading expert in prostate cancer . Dr Myers also mentioned to me that one of his ex students from University of Virginia was at McGill . He mentioned the McGill connection because I am a Canadian expat living on Guam in the West Pacific.

All the best and my prayers are with you.

John



Quote:
Originally Posted by canada73 View Post
GuamJohn,

Out of interest, when you started treatment with Dr Myers, was the triple blockade your only treatment, or did you also have radiation or chemo or surgery??
My father was recently diagnosed, gleason 10 stage 3 (seminal involvement), but clear bone and cat scans. He was on casodex then Lupron, thats been for the past couple of months. Recently had gold markers implanted to prepare for IMRT in another month.., but his pain has gotten significantly worse since the seeds were put in. Hoping it is from that, and not spreading already...

 
Old 02-23-2010, 05:38 AM   #6
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Re: Gleason 9 (5+4 in three areas)

Guamjohn,
Thx for the reply.
This is one of the frustrating things about this disease, all the different opinions and treatments to sort through...
When my father was dx'd, he was also stage 3, with seminal involvement. However his doctor told him that because it had broken out of the prostate, that surgery was not an option. He's now been waiting 3 months for scheduled radiation and light dose chemo as part of a study. As non-surgical options go, I think he is in the best possible plan. But I am frustrated that they didn't consider surgery right away back in October, and then follow it up with rad and chemo. FRUSTRATING!!!!

Last edited by canada73; 02-23-2010 at 05:39 AM.

 
Old 04-28-2010, 05:50 PM   #7
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Re: Gleason 9 (5+4 in three areas)

How is your dad doing? Is he is treatment yet? I totally agree that the worst part is hearing all the different opinions. Here we have so few oncologists or urologists and yet we are still stuck between each of their own opinions! The radiation oncologist wanted to do external beam, in spite of the fact that my husband had bad reactions to radiation for rectal cancer 7 years ago. She was going to reduce the dose however. Then the urologist wants to do Hifu. Then our oncologist, who has brought us through two previous cancers, says, no radiation, hifu is not a proven success and referred the case to a team of radiation oncologists in the US who have advised palladium seed brachytherapy. I am feeling so confused researching each option and the problem is we do not want to alienate any of the three professionals!!! We may well need them in future.

This is as much a mental challenge as it is physical!!

Alison
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
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