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First of all, take a deep breath and know that prostate cancer is not necessarily a death sentence.
I felt the same as you in the beginning. My husband had surgery four years ago in April and had to have salvage radiation, as well. He had 36 radiation tretments about a year and a half after his surgery. At present he sees his doctors every three months and we are just monitoring his psa. All his scans are negative.His psa is 1.3 but he is free of any symptoms. If the psa starts to rise he will need hormone therapy.We have opted to wait on this . We have had a medical oncology consult.
It is important to have a good relationship with your doctors.
It sounds like you might not have this????
I would talk with the radiation oncolgist and see what his opinion is.
Try and take this one step at a time.
It is not easy but you can learn to live with it and have a happy life.
Re: Re: My husband's story cn anyone give their opion
Roberta has given you good advice.
Dealing with your biggest worry first, it is unlikely that you will lose your husband to prostate cancer – at least for many years. The latest statistics from the American Cancer Society show no deaths from prostate cancer in the first five years after diagnosis, so that’s five years you’ve got him for, guaranteed – unless something else carries him off.
After the first five years, there are some deaths from the disease. It would be foolish to say otherwise, but after 20 years more than 85% of the men diagnosed will not have died from the disease. A good deal depends on the age of the man, but it is important to know that half the deaths occur in men over the age of 82 and 90% in men who are more than 70 years of age.
I know that this may not be of great help right now, but it is very important to know these facts.
It seems that you have been very badly served by the doctors you and your husband have consulted so far. There is simply no excuse for anyone to be treated as you report you have been treated. It is very important to find a doctor you can trust, who will explain tings to you in simple terms that you can understand and that you make your treatment decisions with the doctor.
There are many, many men who have been in the same position as your husband with a small PSA after surgery who have survived for many, many years. You can read their stories on the Yana site. – click on Experiences link and then Surgery. Generally speaking if there is a PSA after surgery, this means that there is a small amount of cancer outside the gland which was missed in the surgery, although sometimes the PSA can come from a bit of the prostate gland itself that was left behind. So the first thing yo should do is to get a copy of the pathology report prepared after the surgery which will give you some information as to which of these is the most likely. Your husband is entitled by law to have a copy of the report at no cost, other than the small cost of making a copy. Come back to us with the details of the report.
The most likely and best option for your husband will be some radiation to the prostate bed to hit any stray bits of cancer or prostate gland in that area. Just how much radiation your husband has depends on the radiologist oncologist ordering the treatment. there are many different views as to what the best dose is.
Even if that is unsuccessful, there is still another option available to you and your husband – hormone therapy, more correctly known as ADT (Androgen Deprivation Therapy). I have recently started this myself almost 12 years after I was first diagnosed and expect to make my target of twenty years (or more!!) after diagnosis with this treatment to help me.
I can only add one more thing to the good advice on here already ... dump that Dr Eli Michaels. I'm basing that only on what you've typed on here.
Any doctor that diagnoses a patient on a presumption of the findings of a report that he hasn't seen yet is totally untrustworthy.
As Terry said, get copies of those reports, whatever they are, and take them to another Urologist and/or Oncologist.
One more thing, and someone can correct me if I'm wrong, a Urologist doesn't decide how much radiation a patient should receive, an Oncologist does. (I'm assuming here that this Dr Eli Michaels person is a Urologist).
Good luck Joyce and stay with this forum, it's great.
Re: Re: My husband's story cn anyone give their opion
I was diagnosed with Prostate Cancer September 06. With biopsy taken on 9-15-06. Gleason 3+4 with left apex and left mid with cancer. PSA at the time was 7.7 and was 60 yrs young at the time. Elected to go with surgery which was performed on 11-28-06 at Columbia Hospital in Milwaukee by Dr. Zacharias. My prostate was very enlarged 113ml. This reduced some of my options. Anyway, the nerve-sparing surgery went well and the continence issue is resolved. My post op pathology report showed the right and left anterior margins weere positive. Seminal vesicles and lymph nodes negative. 1st PSA taken 1 month after surgery was less than 0.02. 3 months later 3-28-07, 2d PSA was less than 0.04, 3d PSA taken 10-9-07 was less than 0.04. My current PSA taken2-6-08 was 0.08. My urologist wants me on hormone therapy and radiation therapy. I understand his concern but I elected to wait for one more PSA which will be on 3-10-08. My feeling though is that my PSA by definition is still considered undectable. OPINIONS on further treatment.
Re: Re: Re: My husband's story cn anyone give their opion
A recent study (I’ve just posted it on the site and later today, if I get around to it I’ll put in links, but in the meantime you’ll find it at http://www.yananow.net/SummaryofOptions.pdf ) indicated that there were more than 200 definitions of what was termed bNED (biological no evidence of disease), which means in effect that there are more than two hundred definitions of biological failure used in studies. Naturally, this makes it very difficult to decide when to have treatment, when to watch and indeed what treatment to have.
Tom, by some definitions you DO NOT have undetectable levels of PSA and indeed some doctors would be urging salvage treatment asp because they would take your readings as biological or biochemical failure. On the other hand, some doctors would say that since your readings to not meet the ASTRO definition of failure – basically three consecutive rises – you do not have biological failure. On yet another hand, if you were not using ultra-sensitive PSA tests, you would indeed have an undetectable PSA and wouldn’t even be contemplating failure or additional treatment.
If you and your medical advisors think that there is genuine failure of the surgery, I must say that my personal views is that intermittent ADT (Androgen Deprivation Therapy) is a better bet than radiotherapy, cryosurgery or HIFU, which are the most commonly suggested options. ADT side effects are essentially short term and reversible when the therapy stops. That’s a big plus in my book.
Re: My husband's story cn anyone give their opinion
My opinion would run to the contrary of what Terry suggests. I think of ADT in two ways, one is to greatly slow the clock of progression and two is to shrink the prostate (if intact) prior to radiotherapy. But I dont see ADT as a path of cure.
My sense is that you have a very good chance of cure and that you'll exercise that chance with salvage radiation. It also seems to me that your system is strong, even with positive margins you've gone over a year with only the most minimal PSA reappearing. And use your own sense of where you are at, disregarding what undetectable definitions may say.
The only downside with the radiation is if the cancer has already left the area, in which case it will not cure. This is your call.
Re: Re: My husband's story cn anyone give their opion
I find myself in a similar position as you right now. My husband is 6 months out from his robotic surgery and his PSA is .3-his first PSA after surgery was undetectable. The velocity of the recurrence is unnerving. Prior to surgery is PSA was 9.6 Gleason 4+3 and Staged at T2a. After surgery still a 4+3 but Staged at T3a due to a extra capsular extension. Margins were negative and no lymph node involvement. I'm so scared for my husband as I know you are for your husband. The first thing we do now is to retest and make sure this is not a lab error. The dr did not want to get into details until we knew for sure but of course radiation was mentioned. My husband is still incontinent and I know that radiation will make matters worse. I suppose we will have a follow up bone scan to check for mets also. We have only been dealing with a urologist at this time but should we now be finding a radiation oncologist and a medical oncologist too? Do we need both at this time? Any advice would be appreciated. Thanks for lending an ear and praying for the best for both our husbands.
Re: Re: Re: My husband's story cn anyone give their opion
I hope you read my reply to Joyce.
My husband and I were in similr circumstances in April of 2004 (that is almost 4 tears agao).
I, too, was in a state of panick even though I have worked in the medical field for over 30 years. Maybe I knnew too much.
You definitely need both the radiation and medical oncologist on you husband's "team" but ultimately you will have to make some choices on your own.
Each service has their own thoughts on treating PC and there are even different opinions within the same service.
As encouragement I can tell you that after my husband's salvage readition he had no problems. Dairy products somtimes give him some difficulty but he uses lactaid instead of regular milk.
John's PC had spread to the seminal vesicles which didn't give a very good prognosis but he has been doing well. His psa is 1.3 and holding steady so he and his doctors have decided to just keep a close check on the pas and try and hold off on the hormone therapy.
As I said, there are differnt thought on this but John has made his choice and I will stick by him. All his scans are negative and he is doing well.
One "IMPORTANT" thing is to not waste "Precious TIME and Energy" worrying. Try to enjoy. each day God gives you both. I sisncerely mean this. Get out and enjoy your family and friends and be "HAPPY" you are hear fo today!
A priest told me "Worry is the darkroom where negatives are stored. Do,t go there!!!!"
Please don't think i don't sympathize with you but I have been there, still am in fact, and as we have learned to live with this so can you.
PC is like a game of chess. You need to use stategy. You can't let it beat you.
Best of luck.
If you want to talk, E-mail us anytime.
We'll keep you in our prayers and would ask the same.
PS Charles (Snuffy) Myers has written an excellent book on PC (several, in fact). He is a prostate cancer "SURVIVOR."
Patrick Walsh is another good reference.
Re: Re: Re: Re: My husband's story cn anyone give their opion
Your words of encouragement are heard! The glass is half full right! I think when we get bad news it's of course shocking but I seem to need to go thru a bit of mourning if that makes sense. It's like my life gets put on hold. Can't think ahead or plan ahead at all. When we know what we're up against and we make our treatment plan hopefully then I'll start to live again. We have just been bomb barded with bad news the past few years and I just feel stuck. And it doesn't help that it's another gray day outside! I'm thinking of checking out a pc therapy group that meets at the hospital once a month even if my husband won't go. I need to talk with others about their treatments. It helps me feel more in control when I'm in action. I'll post with the results of his next PSA and let you know our plans.
And I did read Walsh's book but will go to the bookstore and get something written Myers. I had heard this name mentioned before. Thanks for the advice.
Re: Re: Re: Re: Re: My husband's story cn anyone give their opion
Please keep in touch. I agree-it does help to get
together with other people who know what you are
Yuo can E-mail me anytime.
You will be able to smile and laugh again. I didn't think it was possible but it is.
Re: Re: Re: Re: Re: Re: My husband's story cn anyone give their opion
Joyce and Martha,
I am of a similar experience. Initial PSA was 7.1, diagnosed as T2 with Gleason 4+3 then the pathology report said T3a, still 4+3 Gleason. Surgery was good but my PSA after was 0.1. Second month after still at 0.1. Both the hospital of my surgery (Wisconsin) and my local urologist (Hawaii) suggested adjuvant radiation as soon as continent. So 3 months after surgery, late October 2007, I started 30 radiation treatments. First 23 to a somewhat larger area in the pelvis and the final 7 just to the prostate bed. Six weeks after radiation, Jan 2008, I got my PSA tested and it is zero. Will test again in April. So early radiation is good, I think, but my surgeon did tell me to wait for radiation till continence was restored. Fortunately that came in good time for me. I am personally on a careful eating regimen ever since my first diagnosis. Lots of greens, broccoli or kale or cauliflower most every day. Cooked tomatoes and also Flaxseed oil (every 2nd day). Also a bit of pomegranate juice in my first water of the day. Maybe all that is not necessary, but it's easy for me and perhaps helpful. No red meat or animal fats. All in all I sure do feel good. And my sense is that the diet is perhaps not curative but surely will delay any progression that may be in store for me. I hope there is something of help in these thoughts.
Re: Re: Re: Re: Re: Re: Re: My husband's story cn anyone give their opion
Our stories are very similar. We are in Wisconsin too but wish we could be in Hawaii now with all this snow.
I just wanted to udpate a little. We did get back the second PSA results and they still read .3 so unfortunately it is not a lab error as we had hoped. But the good news is that it did not rise in the 3 weeks between tests. Dr wants to wait another 3 months to see if there is a rise in his PSA before starting any other treatment. He says sometimes mens PSA's can remain low for some period after surgery so we will wait and see. This will give us more time for my husband to work on his incontinence.
I am still unnerved with the short duration (6 mo)of a recurrence after his surgery. By what I read this is not good. Also in Dr Walsh's book he states that a rapid recurrence of under year most men would likely not benefit from radiation. I know we will need further tests to try and locate where the cancer is lurking since pathology report was clean except for the extra capsular extension. I read and read and read trying to understand all this since I know we will have some big decisions up ahead. Since you were treated with radiation and your situation is similar to ours your doctor must not agree with what Dr Walsh is stating. I also understand adjuvant radiation would be the last chance for a cure. And boy that is what we all want - A CURE!
Hope you are feeling well and I wish you the best.
Re: My husband's story can anyone give their opinion
Good to hear from you, and I find I do have some thoughts that I would like to share. Also, I suggest that you use google on Predominant treatment failure.
This study shows how unlikely that metastasis has occurred already in cases like ours. As well as other things. And I also want to point out that bone scans and such generally are revelatory of cancer only when the PSA is much higher than that of your husband. So why chase after that reassurance.
From my experience and my surgeon's (Butler at Waukesha Memorial) comments it is very valuable to get continence back before radiation. So work on that and I think you will want radiation thereafter, and I think you are quite likely to get good help from it. But I don't think you should wait any longer than you need for continence. At your time stage this is typically called salvage radiation instead of adjuvant radiation, terminology wise. It is the last chance for a cure, but best to use that chance when the cancer is as small as possible. The only negative that I have read is that one analysis of study data like the one I cite has shown that radiation efficacy is best when there was a positive margin at surgery.
Feel free to dialogue directly with me if I can be of any help. I understand the emotional burden as well as the information I learned from my reading. My wife was a huge help when I was new to this cancer.
Re: Re: My husband's story can anyone give their opinion
Don't rule out proton therapy, which my husband successfully completed at Loma Linda University Medical Center last Oct., more than two years after his radical prostatectomy with "negative margins." A body scan showed microscopic cells in the prostate bed and he was a candidate for proton therapy at Loma Linda. There are at least 6 other places in the states who offer this wonderful treatment.
NO SIDE EFFECTS. The protons are precisely targeted to the cancer cells and the healthy tissue is spared.
Please e-mail me if you wish to know more about this, or go to Loma Linda University Website or its support groups website (just Google "Brotherhood of the Balloon."
If you want information on Proton Beam, click the link - you might find it worthwhile checking the all the links on this section of the Yana site, including the stories of men who have had the treatment.
Since this thread has popped up again I thought I'd share with you all our lastest situation. At 6 months post op my husband's PSA came back at .3. Urologist suggested to wait another 3 months and if it went up to see a radiation oncologist. This bought us some time with his incontinence. He is down to one pad a day so that is better. Well it doubled to .7 in those 3 months. Yuck! We met this week with the Rad Onc and he feels we still have a window for a cure. We did have a bone scan prior to the visit but the hospital messed up the report so it was not available at our 1st visit. Very frustrating. We did decide to have further testing and he will have another CT scan and also a proctoscint. Also will proceed with radiation plans while these tests are being done. He feels a sense of urgency to begin the process because of the PSADT. I'm sure if the scans come back for mets we'll stop the radiation plans. His cancer does seem to be aggressive doesn't it? I have read alot lately on how important that doubling time is to ones prognosis. We're pretty scared as you can imagine.
It is not what we had hoped for but need to focus on something positive somehow. Summer is around the corner. That's good news right!
Take care everyone.