About 8 years ago I had a bout with kidney stones and urologist checked my PSA and it was about 7. He did recheck in 6 mos and it was 8 so he had me do a biopsy. It came back negative but he followed with PSA every six months. It was usually in the 4-5 range. At the beginning of 2007 my PSA was 5.5 so he recommended another biopsy. I said no and would keep watching. All the DRE (Digital Rectal Examinations) had been fine, had no other symptoms. Next PSA was 5.24 and I said ok to biopsy as I had run through my insurance co-pays so I figured why not. This time it came back positive for PCa in one of 12 cores and 4% in that one.
I got the call as I was halfway into a five hour drive on a business trip and I was going to be gone for four days. I was not shocked or stunned as I had somewhat suspected it with the PSA readings. Had to tell wife and kids on phone (would much rather have been home). To top it off, my urologist was retiring at the end of the month. I did see him prior to his retirement and we discussed treatment options which were Da Vinci surgery, IMRT (Intensity Modulated Radiation Therapy), seeds (Brachytherapy), and WW (Watchful Waiting). All docs I have met with have discouraged WW/Active Surveillance because as a young (56 young?) man I should treat it aggressively. At the time I dismissed WW as my first reaction was to have the damned thing out, surgeon get ready here I come.
I then met with radiation doc and the Da Vinci surgeon and read a lot more on the web. The surgeon said it was no problem waiting 6 months to a year and while not necessary for the surgery, would like me to lose some weight. I was interested in HRD Brachytherapy and had an appointment with another group who said they did it, but when I got there found out they did not do it for prostate. The doctor pushed the permanent seeds which I did not want and was horrified when I said I was in no rush. Said it should be done in 6 months latest, scared my wife.
None of the treatments appeal to me too many side effects and none are sure to get rid of it anyway. The treatments seems like using a shotgun to kill a fly.
Just had a three month PSA and got results 2/17 and it dropped to 4.9 with free PSA of 12%. Free was 12% last year and 11.9% three years ago, so I figure things are not changing much.
I am interested in the focal cryoablation (Cryotherapy) I have read about, but until insurance covers it I will have to wait.
I figure I have had PCa several years already( doctor says that was his thought as well) and it does not seem to be going anywhere fast. At this point I am choosing Active Surveillance. I will have PSA every three months with a DRE and will redo the biopsy in about 8 months. In the meantime I have reduced my red meat intake, added some supplements such as Vitamin E and D, extra fish oil caps, more broccoli and am working on losing some weight.
One last note. In reading these posts, many people have remarked on the biopsy and it being painful or uncomfortable. I had my urologist give me a sedative (Valium I think it was) and a local in the area. It was not painful at all at most a little uncomfortable. I found out they generally do not offer this, you have to ask for it.
As my post says, I was Dx December of 2007. After reviewing the various treatments and complications etc, I had decided on Active Surveillance. For the amount of Pca I had, it the treatments available seemed like using an elephant gun to kill a fly. My wife and kids were not happy with the decision, but reluctantly went with it. I continued to research various options to be ready if I needed to do something and also see what new options were on the horizon. I had read with great interest the information from Dr.Onik regarding the male "lumpectomy". After finding out that he did not take any insurance I ruled out the focal cryoablation he does.
I figured I should let my urologist know of my decision to pursue Active Surveillance. He was supportive but said he had a recommendation. Much to my surprise he recommended a targeted focal cryoablation. He said that since I was comfortable with AS, and the cancer volume was low and from the biopsies, contained in one area, it would be something to consider. He said that while he could not guarantee that it would fully kill all the cancer,(though from reading other stories no procedure can do that) it would remove what is known now. I would then continue on my AS routine to make sure it does not recur. It also leaves open all other options should it recur It would be as he called AS with a kick. While he is an experienced cryosurgeon, he has not done a focal so I would be his first for this. I do feel comfortable, however, in his expertise in the area, so after talking with family, said I would do it.
He will only be freezing about 1/3 of one side of the prostate and will not come close to any nerve bundles. He believes that the risk of ED is very small and incontinence is even smaller. I will stay one night in the hospital (only because I have sleep apnea and they always want to monitor after anesthesia). The good part about this is if I can pass urine, he will remove the catheter before I leaves the hospital.
All in all this seems to be a good approach, one that I am comfortable with. It is miniminally invasive, has much less of a chance of major side effects, the known cancer is gone, all other options would still be available if needed later, and my family is happy that something is being done.
He will do the procedure on Monday May 5th. I will update again after.
I had the focal cryoablation done yesterday, spent one night in the hospital and just got home. The doctor ended up doing more than planned, instead of 1/3 of one side it was most of one side. He had a temperature probe in the nerve bundle on the side he was working on, and it never got below freezing. He was nowhere near the one on the otherside. He told me that ED should not be a problem and apparently it will not be. To my surprise (and delight), I woke up this mornng with a full erection. The doc was very pleased when I told him, especially since I have a catheter in.
Everything else went fairly smooth and the only problem is the catheter. It is a pain, literally. He had hoped to take it out today before I was released, but said it would have to stay in a few more days. Hopefully it will be out Thursday (today is Tuesday).
He believes he got it all, however I will remain on Active Surveillance to be sure.
I hope this treatment does turn out to be successful, and not only for my sake. If it is successful, it offers a great option for early, minor PCa (if PCa can ever be minor). It is less invasive than anything else and should have fewer side effects than anything out there at the moment. I will update later, both on my PCa and the side effects.
Well its been a week post op. The catheter came out on Thursday so I only had three days on that horrid device. Slept most of the night Thursday waking once to go. Friday morning was constant trips to the bathroom and just had dribbles. Called Doc and he gave me Flomax. This pretty much set everything right. I have only woken up once one night since then. The area where the cryo needles were inserted(perineum) is sore but is getting better. Scrotum had swollen big time and was black and blue. The swelling has gone down and the color is fading.
I had volunteered last year to do a Mothers Day brunch for my mens club. I spent Friday and Saturday shopping and hauling the food. Sunday came and made a big brunch for about 130 people, cheese grits, two types of eggs, lox and bagels, biscuits, lots of fruit, and some cakes. I did have lots of volunteers in the kitchen Sunday. It did wear me out however.
I was back at work on Monday. Did not stay the whole day because after sitting for a long period it was getting painful in the perineum area. Still have some small urgency problems and urinate a little more frequently than before. This is also getting back to normal though. ED is not a problem. Have been getting erections though things are still sore from the catheter.
I am looking forward to my next PSA in three months. Mine was somewhat high to begin with so if it is lower, I will be happy.
It has been several months since I last posted.
After initial very good results from the focal, things went somewhat downhill. I had no problem with erections for several months post procedure and then started having problems. Also while again for several months post procedure, I had plenty of ejaculate then all of a sudden none. Penis seemed to be quite a bit smaller for awhile. No problem with incontinence.
Urologist started me on Cialis 5 mg daily and that helped quite a bit. Back to normal size, and while not as erect as previously, I can have penetration and both wife and I enjoy it.
As far as PCa, had a my PSA done in August and PSA had dropped to 3.5 and DRE was fine. This was about what we both expected. Since I still had most of prostate, I knew it was not going way down. The fact that it had dropped about 2 points was encouraging.
Had two PSA tests in December. I had just switched regular docs and new one had lab work done and had included a PSA. That gave me a bit of scare since it showed 5.8, but since I did not know one was being done, I had not refrained from certain activities known to raise PSA. I had my normal screening done the next week at urologist and while it was higher, it was only 3.9. DRE was again normal. He and I discussed this and will get another done in April. If it rises then I probably will get another biopsy and go from there.
Will update again after that one.
Good luck and health to all,
It has been a couple of years since my last update. As I first reported, when I was diagnosed my initial treatment was AS. Because family was not terribly comfortable with this, I opted for focal cryoablation. I was the first one my urologist had done, but I came through with very little problems. I do take Cialis 5 mg generally 4-5 times a week but everything works as it should.
After the focal, I kind of slid into apathy about my condition and slacked off on my PSA tests after the one year showed a slightly elevated PSA of 4.97. He wanted to do a biopsy but I did not. I was afraid it would be positive and the family would want further treatment.
I finally did go back for another PSA a couple of weeks ago and it was 5.9. He again wanted to do a biopsy and this time I agreed. I had the biopsy last week.
I just got the call from him with the results. All cores were negative so for the moment I am cancer free. That was a big relief as I fully expected it to come back positive with a small amount.
I will now keep a better watch on things and get my checkups as I am supposed to.
As I said earlier I would have been happy with AS but as things have turned out, I can recommend the focal. If you have low grade T1c cancer this procedure offers a great option. To any readers if you are diagnosed with low grade cancer please take the time to think your options through. I met an friend who had been diagnosed T1c with one core showing 5% and was heading to the hospital for surgery to remove the prostate. He was scared of the word cancer and felt he had to take aggressive action right away. In my opinion it was an overreaction but that was what he wanted.
I do know if you have found this site you are at least trying to get informed. With so many options now available, please take the time to step back and consider if the cure is as bad as the disease. Do not rush into anything until you give yourself time to recover from the shock of finding out you have cancer.
Good Luck to all.
Had a PSA done about 5 months ago and it dropped from 4.97 to 3.98. DRE negative. Going to have a recheck on the PSA in a couple of months, but everything seems to be ok for the moment. I will continue to get rechecked as doctor recommends.
Sorry for not updating sooner. I have been very lax about doing anythng since my last biopsy. I did have my PSA done a couple of months ago and it was in the same range it has been for years so I am thinking nothing is happening in the prostate. I will get by the urologist this fall and have a complete check up done, but as of now things seem to be going along fine. I will update again after seeing urologist.
Overall I am happy with the partial cryo therapy I had done. I probably would have had nothing done except AS but for family, so I was glad that the urologist offered to make me his guineau pig.
It has been several years since I have updated my story. Since the partial cryo, I have been on somewhat active survelliance. I go for my PSA checks every year. It has had a slow rise but nothing dramatic. I just went in for my PSA last week and it was 6.9 which was a relief to me as I was somewhat expecting higher. Last time I had it done was about 14 months ago and it was 6.4 so not that much of an increase. Finger test showed no problems. Somewhat at my urging, the doc and I talked about a biopsy, since when I started this journey, he had told me after the partial I should get one every couple of years. Since it has been longer than that, I told him I thought now would be a good time to check. He is setting me up with something new (to me at least) an MRI to map the prostate and see where they need to direct the biopsy. He says they overlay the MRI results over the ultrasound and decide where to take the plugs. Just waiting for this to be set up. Another doctor will be doing the biopsy since he is not trained in this method.
As far as everything else, not much has changed. Still some ED but with Cialis I can function, maybe not to former levels, but well enough. I will update again after the biopsy.
Since my last update I had the MRI to image the prostate. It showed several areas of "probable" cancer. My PSA had risen to over 8.5, so I was concerned. I had the MRI guided biopsy where they took 24 cores. It was a tense time waiting for the results as from the PSA rise and "probable cancer" in several areas from the MRI, I was already considering my next move.
To my delight and surprise, the biopsy came back negative. They had biopsied all the "probable" cancer areas and other sites as well. 24 was a lot since they did not have to check nearly half of the prostate since that was the part that was "dead" from the focal cryo. To say I was relieved would be an understatement. So I am back on AS and getting my checks for PSA. It had dropped to 7.9 after the test, and now with the latest check is about 7.6 I believe(I can not find my results sheet, but I know it had gone down, might even be a 7.3, my memory is not quite as good as it used to be...lol)
Still have the moderate ED, but I think that is from other reasons, back and neck problems. So right now I will continue on with this regimen and continue to monitor. I turned 65 this year so I don't have to worry about insurance since Medicare. One other good thing, for my 65th birthday present my wife got me something that I have wanted to do for a long time, a certificate for a skydive. She figured the kids were grown and the life insurance was paid up (she had been against me doing it for many years). The only drawback was I was scheduled for neck surgery in two weeks. I called the surgeons office and said I had an odd question about the surgery. She had assured me she had heard them all, so I asked if I could skydive. After a minute or two of laughter, she had to admit she had not heard them all. She checked with the doc and he said no problem. So the weekend before Labor day I went. It was amazing. I am afraid of heights and sitting at the open door 14,000 feet up was very unnerving (they had to pry my hands off the door frame to get me to go) but once we were out it was great. Had a wonderful time and went back the Labor Day for another go. After the recovery form the neck surgery, I hope to learn how to do it on my own, not strapped to some one else.
Anyway, that is about it for now. Good luck to everyone on this journey.
Fred's e-mail address is: fredtrav AT gmail.com (replace "AT" with "@")