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Posted 3/29/2009 3:02 PM (GMT 0)
Greetings everyone,

My husband received the news in February that he had prostate cancer. I am following your chat room format all of his stats are in the footer of this post. I find your format helpful when following everyone's journey. I have been lurking here since mid February and find all of the information so helpful. My husband is not dealing with this well. I am trying to keep him positive and I have encouraged him to join support groups, but he refuses. I am trying to learn as much as I can as quickly as I can, but there is just so much to absorb and try and sort out. I am sure down the road it will not seem so overwhelming, but for now it is.

My husband has already started treatment. He has had a hormone shot and he had markers placed last Tuesday. He will begin external beam radiation in two weeks. He wanted to have surgical removal, but due to his weight they advised against it. His external beam treatments will be between 5 and 6 weeks, followed by seed implants and an additional hormone shot. He keeps getting infections. He had one after the biopsy and another after the marker placement. I do not want to see what happens after his seed implants.

A little about us. We live in Colorado. My husband has a daughter from his previous marriage who is 19 and we have a son who will be 1 in a few weeks. We discovered his prostate cancer thanks to a PSA test. Sadly, his first PSA was done at 43 and it was 3.8. If I knew then what I know now my husband would have had a biopsy then, but we were told 3.8 was normal. So, he had a second PSA done by a new doctor in 2008 and it was 4.4. That prompted the biopsy and the diagnosis. His Urologist believes this has been growing for at least 5 years.

I have a few questions...

First, many of you have had surgery instead of or in conjunction with radiation. In my research I have found that when one has the prostate removed one's PSA can drop down to undetectable. Is it possible to get the PSA that low with just radiation and seeds? So many of you seem to have really good outcomes with surgery.

Second, because my husband is not having his prostate removed we will not get a true picture of where he is. I see many of you have upgreaded or down graded gleason scores after surgery. So, we have to rely on the other methods such as MRI, CT Scan, PSA test and biopsy results. From your tests that were done how accurate were they to your pathology reports after surgery?

My husbands MRI showed high volume involvment (75% of prostate). Everything else was negative. I have read the MRIs are not really that accurate, but in the overall picture it does help. His doc gave him a cure rate of 85% to 95%. How reasonable does that sound? I am worried due to the high involvement.


Thank you for any advice you have. I look forward to getting to know everyone.

Cheers,
Bea

----------------------------------------------------------------------------------------------------------------------
Age at DX 47 (2/09), current age 48 (he just had a bday)
PSA 2004 3.8
3/08 4.4
2/09 6.0 (after his biopsy, they expected it to be elevated due to the aggravation)

DRE: All Negative T1c at dx, but with addt'l info it sounds like it is more T2c.
Biopsy 2/09 6 of 12 cores positive 35%, 50% 70% 70%, 85% 90% Perinural Present 3+4=7 (2 cores 3+3 and 4 cores 3+4)
MRI 3/09 No Peri No Lymph No indication of spread. Prostate 75% involved (High Volume) Prostate 16.4 grams.

Treatments
Hormone Shot 2/09
Starts EBRT 04/09
Seeds 5/09
Hormone Shot 6/09
Posted 3/29/2009 3:34 PM (GMT 0)

BeaHappy

Welcome to this place that nobody really intended to be.  Since you have been lurking around for awhile, you have seen that there are many supporters who will offer a ton of great information, and some very good moderators.  My advice would be to purchase the book by Dr. Patrick Walsh,  "Surviving Prostate Cancer".  I bought this right away, and it helped me a lot.  I've lent it out twice now to others who are in this position.  While it seems most of us are surgery types, there are a number of others as well.  The one thing I remember from the book on seeds, is that his PSA will probably not go to 0, but reach a "nadir" point - bottom number.  That will be one of your measures on the success of treatment.

Again, welcome....and good luck...

Posted 3/29/2009 5:07 PM (GMT 0)
Beahappy,
My biopsy report showed 2 cores with Gleason 4+4 and 4+5. My pathology report was 4+4 so as you can see, my biopsy was fairly accurate. I also recommend buying Dr. Walsh's book on surviving PC. It has a lot of very good information about all the options. You can purchase thru this site which helps keep this site operational.
Posted 3/29/2009 5:34 PM (GMT 0)
Beahappy,

Welcome here, glad you found us and have been lurking and learning. In my opinion, with your husbands stats, they would normally recomend surgery. The percent of cancer in his biopsy cores is high and would be a big concern to me. You said they didnt reccomend surgery because of his weight. I have heard of that as being a problem with robotic surgery, but rarely a problem with open surgery, like I had. Usually after seeding and/or conventional radiation treatment as the primary treatment, the PSA after treatment won't get down to a "zero" as you have seen most of the surgery men here. The other disadvantage of having the seeding and/or radiation first, if it doesn't work, then having salvage surgery is difficult at best, and many surgeons and/or urologist/surgeons won't even do them. I am sorry your husband, and you, are having to go through this PC ordeal. But hope you can find some comfort among us.

With his pre-treatment Gleasons being "7", and with the high percent of cancer in the core, still a bit surprised they wouldn't reccomend surgery as first line of treatment. My pre-surgery stats were similar to your husbands, and they wouldn't do "seeding" for me, and they didn't think radiation would get all the cancer. Have you been to more than one doctor for an opinion?

I also agree on the book suggested, I had read it cover to cover several times before I even had a PC dx.

Good luck, and keep us posted.

David in SC
Posted 3/29/2009 6:32 PM (GMT 0)

Greetings, Bea.  Sorry you have to be here but you are among friends who all have something in common.  I too recommend Dr. Walsh's book and also would recommend you get a second opinion.  While I have great confidence in my brothers and sisters on this board because of what they have experienced first hand, there is nothing like hearing from a medical professional.

When I was diagnosed I weighed about 250 lbs (5' 11").  I had the open surgery and did fine.  I also have a colleague who is quite a bit heavier than I am (maybe 400 lbs) and he had the perinium (I think that is how you spell it - they make the incision between your anus and your scrotum)version of the surgery.  So it is possible to have surgery and get it out if that is what is the best treatment. 

Do the research, get a good second opinion, make a decision that is right for both of you and then go for it.  Let us know how things are going - you have found supporters here who have been there and welcome the opportunity to help in any way we can.  David

Posted 3/29/2009 6:50 PM (GMT 0)
Hey Bea sorry to see you here. While I'm known here as not the biggest supporter of radical surgery in your husbands case it makes more sense to me than radiation. Especially with his young age and the 75% gland involvement. I know for very heavy men DaVinci surgery can be a problem but I always thought it wasn't with open surgery. You should really get a second opinion. I too am from Colorado if you need any referrals I know of a few good urologists and a radiologist I would have no trouble in recommending.

As far as the Dr Walsh book goes it's getting a little dated but if you're in the Denver metro area I'll just give you my copy if you wish. Then again if you went to TUCC (The urology center of Colorado) like I did initially they may have already given you a copy...
Posted 3/29/2009 7:07 PM (GMT 0)
Hi Bea,

Welcome to all the wisdom provided here on this forum - I don't know much about HT or radiation so cannot comment on your specific questions about post-treatment PSA, however we are big believers in second opinions,  and as the wife of a large man myself, we had no problems with the open Sx either & our experience was similar to CPA and others. My husband was not a suport group person either - we tried a few telephone chats and speaking with leaders of local support groups etc,  but I ended up doing all the talking which was not the point, and then my husband refused to talk to anyone else who phoned up! We never did make it to any meetings. So don't worry about that too much - he may wish to speak to others in his own time, or like my hubby, he may never do it.  It must be very hard managing all this with a very young child. We also have a blended family and 2 adult kids (left home now) as well as a younger one (now 9 yrs). Good luck - you have come to a great place to toss around ideas and sift through information. Lana

Posted 3/29/2009 8:18 PM (GMT 0)
Like your husband, I received a Lupron (Hormone) shot a month before the surgery to drop my Testosterone to 0, which it did.

I was told it would put me "On hold" until my surgery.

I asked about seeding, and was told it was not advisable UNLESS the surgery failed.

I would advise your husband gets a second opinion. Assuming his heart will accept the surgery, I would want to know if the cancer has spread beyond the prostate to the lymph nodes.

Is his present Dr. the same one who took the first PSA and told him it was "Normal" ?
Posted 3/29/2009 10:45 PM (GMT 0)
Hi Beahappy

Sorry you have to be here but glad you are here with us. My first urologist wanted me to have seeds and external radiation. I researched and listened to the radiation Dr. I sought out a robotic Dr with a lot of experience who had treated a friend. I talked to a Dr who did perineal surgery. I decided to have open surgery. My Dr
told me I needed to lose 50 lbs before surgery and I did that. Surgery was a breeze and so far my life has great with just a little ED remaining. I am not getting into the debate about PSA. I made my decision as all of have to do. So until something better comes along as to prevention or treatment, we have to live with what we have, so I hope everything goes well for you and let us know how your journey progresses.

Mika
Posted 3/29/2009 11:29 PM (GMT 0)
Hi Bea,
In regards to biopsy reports, I found out that my biopsy Gleason score of a 3+3=6 was upgraded after surgery to a 3+4=7 with a tertiary (slight amount of) Gleason 5. So that what I had first, at biopsy, thought of as a slow growing disease was in fact a much more aggressive disease. As a result, I now consider biopsy results to be only an indication of the minimum level of cancer present and not a true measure of the real condition of the prostate. Of course, this is completely understandable as the biopsy is only a SAMPLE of the prostate tissue, but so many treatment decisions are made on the basis of the biopsy report that it is definitely something to keep in mind. Originally my doctor had supposed that I could go years before I risked having the cancer escape the prostate, but after the final pathology report (post surgery) he revised that to say that I probably had only a year before the disease would have spread.
In my opinion, if someone is a decent candidate for surgery then that is what they should do, but of course other people may differ. Along with the fact that it is easier to do surgery first, then if needed radiation, than the reverse, I also believe that if the prostate is removed it is less likely to be able to give you trouble later in life.
Best of luck in getting through all this!
Mark
Posted 3/30/2009 12:32 AM (GMT 0)
Dear Bea, I feel for you and your husband. You are going through a lot, with a small little child. You are amazing....You sound very strong and wise... I dont know what you will decide upon, as treatment, but we are here for you, and you can write whatever emotions you are feeling,....we have all felt them...The treatments are all different, and all have their own individual side effects, and troubles for a time.

Just dont let any doctor tell you that it will be an easy treatment. Not one of the treatments for prostate cancer is a breeze, and there are myriad questions and troubles and you will have crying times.....You will get through it, and although trying and sad, it is now a part of our life and our societal medical treatment...We are in the trenches as far as this disease is...My husband, like yours, did not want to talk about it to others,

...everyone is different....I was the one to try and find answers....and I did in this forum. This is a fabulous site for answers and finding out what you need to know and to go forward on. It will give you power and strength...You will need it....my best to you......Diane
Posted 3/30/2009 1:00 AM (GMT 0)
Bea,
The results from surgery and radiation are the same, so it boils down to a personal choice. The cure rate your doctor stated seems high, it is probably more like 70-80%.

I don't buy into the thinking that the pathology after surgery gives you a better idea of the cancer. Even if the Gleason is upgraded or downgraded what difference does it make? The cancer is either gone or it's not gone; the changes in gleason don't make any difference in your actions. The only benefit from surgery in this regard is knowing if you have a positive margin or seminal vessel invasion. Radiation should do a better job if the cancer has slightly penetrated the margins. As for salvage radiation or surgery, both have a low probability of cure and have severe side affects.

The 0 psa after surgery is the standard. After radiation the goal is a low, non rising psa. A rising psa in both cases indicates a reoccurance. You can identify a reoccurance after surgery much faster than radiation as it may take months to get the psa to it's low point. The largest cause of reoccurance is because the cancer has already escaped the prostate gland and neither surgery or radiation can cure this type cancer effectively. If a reoccurance occurs locally it is most likely that the surgery or radiation wasn't done properly (prostate tissue left after surgery or too low a dose of radiation or dead spots in the radiation treatment. These can be eliminated if you go to the very best doctors.
So the choice is really personal and should be made after you researched all the optons and side affects.
Good luck on your husband's treatment.
JohnT
Posted 3/31/2009 3:56 AM (GMT 0)
I certainly would not want to add to your anxiety, but I would recommend you get a second opinion if you have not already done so! I am not saying there is anything wrong with your diagnosis and plan as it stands - however, for peace of mind and to make sure - second or even third opinions are wise. You still have time, but you will need to hurry. You will note from my signature below that I changed my mind from additional opinions. Getting several opinions is very standard when making these kinds of decisions. Blessings.
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