I had a PSA reading of 14.8 about a month ago. To the best of my recollection it was the first PRE test I have had. A DRE (digital rectal exam) found a "hard nodule bilaterally." MRI concluded "PI-RADS assessment category 5...clinically significant cancer is highly likely to be present." Subsequent bone scan result says "metastatic lesion at left sacroiliac region cannot be ruled out. Follow up study is suggested." Unsure what that means. I am scheduled for prostate biopsy this coming Tuesday (April 9 2019). Urologist already said if bone scan shows metastasis then hormone therapy would be indicated. My only physical symptom to date is frequent need to pee (at least once a night, two to three times during the day.) Have had this condition for over 10 years. I had a DRE around that time (2009) and was told by urologist that I had an enlarged but benign prostate. So that's where I am right now.
I would deeply appreciate hearing from anyone in a similar condition about what to expect. And particularly about hormone therapy, including removal of testes which urologist suggested. (I'm pushing 78 and don't really need them but am concerned with side effects such as weight gain).
Thanks so much for any help.
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3100connecticut
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First, l hope you will take some comfort in the fact that prostate cancer (assuming it is that) is usually a slowly progressing disease. Some men survive for 15 years with that diagnosis. Read Todd Seals story, for example:
The really critical part is sacroiliac bone met - it is that, more than anything else, that will determine your therapeutic options. If it is possible to safely biopsy that, it may tell you a lot more than a biopsy of your prostate. If they can't, they will have to assume it is a metastasis - if they put you on hormone therapy and it shrinks, then it was a metastasis (lesions that are not prostate cancer metastases don't shrink with hormone therapy).'
Assuming it is, you are right that some kind of hormone therapy is certainly your best starting therapy. There are different kinds of hormone therapy and there may be other options, like radiation of the prostate, that may be worth considering.
You'll probably need a medical oncologist to go over the options with you. If you are anywhere near New Haven, I would recommend you talk to Dan Petrylak at Yale. Maybe call him Monday morning - he may have his own ideas about whether a prostate biopsy is necessary.
Many thanks for your insights. They make a lot of sense. I only got the results of the bone scan two days ago and haven't had a chance to discuss them with my urologist. That will happen this coming Tuesday, the day of the biopsy. Unfortunately I live on the other side of the world from Yale, in Bangkok, so seeing Dr. Petrylak is not really an option. I'm pretty confident in my urologist, though, and the hospitals here are fine. It's just that there's so much information out there, much of it conflicting, especially about which hormones and combinations of hormones are best. After reading and reading you're just sort of left with a headache.
No problem. I lived at 3100 Connecticut Ave in DC a long, long time ago but the address is an easy one for me to remember for user names, passwords etc. Incidentally, this is my first time using this blog (any blog, actually) and I'm kind of lost as to how it works. When I type in my user name it says there are 3 replies but the only one I can see is yours. Thanks for any hints.
Stunningly beautiful day today. Take um as they come and make the best of each one! That's my plan, and I'm sticking to it. Smooth scanning to you, Sir, come Tuesday Scan-day. I'll be sending my best scan karma in your direction. Scan Well - cujoe-the-sometimes-canine-captain
I need one of those.. lie still? That doesn’t sound too good. If yo7 could be beamed up anywhere in the world , where would you go ? I think I’d choose those huts over the water in Bora bora or Tahiti ..
Sounds like a good choice. I'll meet you, the sexy wife, and 12# Little Miss Lulu there. I'll take Hut # 3. Maybe Fish will join us with his clan?? Casodex-laced coffee/tea in the morning and Viagra Cocktails at sunset every day. Hot fun in the summertime.
Whatever it takes , we’re IN! We can find the chief drink some kava and bula bula ..Fish has got to come . Or else who would catch the fish? Sly stone “ hot fun in the summertime” or how about “ hush my darling , the lion sleeps tonight” Aye aye El Capitan !
I've been to Tahiti and Bora Bora...a long time ago, when I was a lot younger and a lot healthier. I never had need or occasion to check out the medical facilities, but I kind of think it's not really what men our age are looking for.
Appreciate your thoughts. Actually I m 77 and change. Looking forward to biopsy in two days. Then I assume I will have to choose between castration and ADT, both apparently with the same side effects. Curiously, despite discouraging MRI and bone scan I have no symptoms other than frequent urination which I've had for years. Frankly I've half a mind to just say fuck it and do nothing further.
They won’t offer you that choice . I had to ask . Wait one year was my answer .
You might need androgen deprivation therapy (hormone therapy) as your doctor suggested, but you might not need to do it permanently or you might be able to do it intermittently. As Lulu700 has indicated, the side effects are the same for orchiectomy: hot flashes, weught gain, loss of libido, loss of stamina, loss of bone and muscle. If I was in your situation I would opt for the shots to keep the option open to go off of it. As TA has said, your cancer may be very slow growing and not require continuous androgen deprivation therapy to manage.
If your urologist has not spoken about hormone therapy, maybe bring it up. A second or third opinion can’t hurt. It helps avoidance of second-guessing later. You are blessed with a healthy attitude from what I can tell. It will serve you well.
Actually, when my urologist saw the results of my MRI, his first response was surgery (castration) as the most practical option given my age (77). Quick, simple, permanent, and would likely stop the cancer progression in its tracks. "The testosterone is feeding the prostate cancer," were is exact words. But he has yet to evaluate the bone scan, which according to the radiologist shows "possible" metastatic lesion in sacroiliac area. Also upcoming is a biopsy (tomorrow) . So we'll see. Thanks for your thoughts.
Allen, Faced with the decision to do ADT or surgical castration when my PSA did a radical rise after surgery and IMRT, I deferred on the surgical option (with some encouragement from both my MO and surgeon) and went ahead with a plan to do IADT. After 3 months of ADT (with 30 days bicaludimide up front for PSA flash), my PSA was undecectable @ < 0.1 and my T was 9. I went off ADT immediately and 3 months later my PSA remained at < 0.1 and my T was a whopping 586!. my MO was dumbfounded. I have remained off ADT now for 15 months and PSA is still < 0.1. uPSA might show different results, but at 71 years old with T fluctuating within the normal age-adjusted range, I don't care to know if my PSA went up 0.02 over the last three months. (Note: Your mileage may vary significantly from those reported above.)
So, what do you have to lose by trying ADT for some period up front (along with maybe some radiation treatment to kill off the hot spot on your sacroiliac and maybe of the prostate itself as suggested by TA)? If any or all of that doesn't get the job done, then surgical castration is still there as an option.
As for having to get up to pee once a night, well, I'm willing to bet the largest majority of people here are at least doing the same, and most are up two, three, or even four times. I have a artificial urinary sphincter to control my urinary function, and I still usually get up once a night. So, hang on until you get the pathology report. As I understand it, the main advantages of surgical castration are the convenience of not having to get shots and lower cost. (If you are paying out of pocket for ADT.) Think about it. No reason to rush any decisions until all the result are in and you have ample time to consider the options.
In the meantime, since all of the other parts must still be in good working order . . . Celebrate the fact that you're still kicking at 77. Be Well - cujoe
Thank you, Cujoe. Appreciate your thoughts and encouragement. As biopsy approaches (tomorrow) I'm more and more inclined to go with the ADT shots. I'm sure my insurance will pick up at least part of the tab. This is all new experience for me. We'll see.
Okay guys, can you help me out here. I'm really new to this and the initials are beginning to freak me. I looked up ADT (androgen deprivation therapy, which seems to be the same as hormone therapy) And I know what PSA is. But I'm puzzled about uPSA, T, MO, IADT and TA. Thank you.
If I had taken that test 2 years ago I would have flunked with zero out of five. The TA would have really had me scratching my head. Now, sadly, I passed with 100%.
You are very welcome. This forum is all about learning from those who have traveled the PCa road before us. There are many here who have done every treatment combination possible. And while we are all different and there is no guarantee that what works for one person will do better, worse, or the same for you or me, it sure helps to know that there are others out there who want to help and care about our outcomes. Good Luck on Tuesday & Be Well - cujoe
3100connecticut. I wish you the best in outcomes. Like you and many others, this can be a scary time. Simply pace yourself, take it day at a time. Know there are others that have been in this situation. Speaking for myself, this forum helped me in so many ways. There are many here that have so much to offer in both knowledge and support.
I found it helpful to find others with similar issues, and link to and read their posts. For instance, I went through a regiment of HT and ADT medicines for 3 months, prior to having a RP (radical prostatectomy). Hearing from others, I knew what to expect for side-effects and most importantly, how to best deal with them.
I was in Thailand (Ao Nang in Krabi) 2 months before knowledge of my condition. It was beautiful, same as many other beaches I've been to in Thailand. Keep your mind strong and focused on life. Exercise (important), and keep active. Each day can be a gift!
I HOPE YOU GET TO READ THIS BEFORE YOUR BIOPSY. TELL THE DOCTOR TO PERFORM IT UNDER ANESTHESIA BECAUSE IT'S NOT A PLEASANT TEST. MOST UROLOGIST DO NOT WANT TO PERFORM IT UNDER ANESTHESIA BECAUSE IT REQUIRES THAT IT BE DONE IN A HOSPITAL SETTING.
IF I HAD TO IT AGAIN... PUT ME OUT BROTHER... PUT ME OUT...
Thanks for the heads-up but it was a bit too late. I just got back from the biopsy and it was, as you say, not pleasant - at all - even with the lidocaine shots, roughly equivalent to having a small pineapple crammed up your butt, but tolerable. Not my favorite experience, but short (less than 20 minutes) and then out the door. Results in two weeks. In comparison, I had a colonoscopy a couple of months ago. They said they were giving me a sedative "to relax you." Lying on my left side, knees up to chest, I watched through the chrome bars of the gurney as the drug was going through a needle into a vein in my hand thinking, "gee, I don't feel particularly relaxed." Next thing I knew I was opening my eyes in the recovery room. Also an out patient procedure. Go figure.
What the hell. I like pineapple. How come I got a very large electric stapler shoved up my butt? Fourteen times, fourteen times! This sadist would pull the trigger, and then, after the longest second ever recorded in history, wham! Fourteen times. Half way through the nurse said "Dr. his ass is falling off the gurney." How can that be? I was sure I was stapled to that gurney. I just knew when I was shuffling to my car, parked in aisle G, that people were saying, "Look, Honey, that guy just had an electric stapler shoved up his ass."
Yeah, the staple gun was a great analogy. That's exactly how it felt. 14 times (I was counting through gritted teeth). I think I tore a hole in the mattress gripping with my fingers. They said they were giving me lidocaine shots to lessen the pain. God knows what it would have been like without them. Anyway it was over in about 20 minutes and the pain in the butt lasted only about an hour afterwards, so...WTF.
Dr. his ass is falling off the gurney." How can that be? I was sure I was stapled to that gurney. Now that should be in a Laurel and Hardy movie...(black and white).
Yeah, that's what I was thinking during the procedure. (I was trying to think of ANYTHING but what was going on in my butt.) How come they can't do this like a colonoscopy, during which I was totally out of it. All I remember of that was a shot of something going into a vein in my hand and the next thing I'm waking up in recovery. I suppose it's the added requirement of an anesthetist.
I'm good. Had about an hour of discomfort after the biopsy. (Wish I had thought to bring Tylenol for the ride home.) One day after and no problems. Fever normal, pain is completely gone, a bit of red in urine which they said was normal. So...just hurry up and wait I guess Take care and thanks.
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