My PSA readings went from just over 1.0 in 2006 to 5.98 in December 2009 so my primary doctor recommended I visit a urologist. The urologist (Dr. Stephan Werner) did a DRE and found some enlargement but no suspicious lumps or hardness. He initially thought it was prostatitis and gave me an antibiotic.
A subsequent total and free PSA test showed the reading down to 5.3 but not enough to satisfy him. So, he recommended a biopsy which was done on 5 March 2010. He told me on 15 March that I had some Gleason 6 (40 percent) and some Gleason 8 (3 percent) on the right side. He took 18 samples during the biopsy. His concern, of course, was the Gleason 8 and suggested aggressive treatment (e.g. radical prostatectomy) but was willing to consider all other alternatives. Next step was a nuclear bone scan (no metastasis) and an MRI (confirmed suspicious areas). Since I had been considering radiation as my therapy, he performed a cystoscopy to see the extent of urinary constriction. Based on his findings, he said radiation would NOT be a good option for me because it would probably aggravate the constrictions and might require some preliminary procedures (TURP, TUNA) and possible hormone treatment. We agreed radiation was not the way to go for me.
Because of my interest in preserving some chance at future potency, we began discussing focal cryotherapy to treat the right side only. He informed me it was still investigational but he thought it a feasible alternative. I also liked the idea that it was out-patient and required less hospitalization and recovery than RP. Due to my age (56) and existing heart issues (mitral valve prolapse and left branch bundle block), I needed to get a cardiac clearance by taking a nuclear stress test and echocardiogram. This scared me more than the cancer so I balked for about a month but eventually realised I had no choice. Radiation was not an alternative for me and hormone-therapy has a number of health risks I preferred not to take. So, I took the tests (not so bad after all) and got clearance from the cardiologist.
I had my focal cryotherapy on 13 July 2010 at Doctor's Hospital in Lanham, MD. At present (18 July 2010) I am in the process of recuperating. I am on a subra-pubic catheter and pain meds as needed. I still have dark and occasionally bloody urine but the biggest issue right now is the bladder spasms. I have some rectal soreness but it is not bad.
All in all, I think I am well on the way to post-operative recuperation and I think everything is as expected. I have an appointment with the urologist on the 21st and I hope he will remove the catheter at that point. Only time will tell whether the focal cryotherapy got the cancer completely (there is a risk that some cancers can be missed with sub-total ablation). I am hoping to regain normal urine flow after my prostate and urethra heal and I am hopeful, in the long-term, to retain my potency. I know there are no guarantees but the potency issue was my main reason for selecting the focal cryotherapy in the first place.
Jake sent in a very brief update. His PSA is 2.2 and he has his checked every three months. He makes no mention of potency or continence issues.
I am a little bit concerned because my latest PSA (January 2011) has increased to 2.9 from 2.2 (October 2010). Urologist says he is not too concerned but did say that if it went up again in 3 months that I will need another biopsy. Ugh! He says he does not know what a "normal" PSA should be for someone who has had half of the prostate removed.
ED is still hit-and-miss using Viagra (sometimes it works, sometimes it doesn't).
Awaiting visit to urologist on 23 May 2011 to discuss rising PSA (2.2 to 2.9 to 4.4)
My PSA on 7 May 2011 (10 months after focal cryotherapy) was 4.4. Percent free was 20 percent. I am very concerned that the PC has returned and am dreading the thought of another battery of tests (biopsy, bone scan, nuclear cardiac stress test, etc.) and, of course, the next PC treatment.
Focal cryotherapy (right) - 13 July 2010
PSA: July 2010 - 7.98 (pre cryotherapy)
September 2010 - 2.2
February 2011 - 2.9
May 2011 - 4.4 (20 percent free)
Since my focal cryotherapy on 13 July 2010, my PSA has steadily risen. As of late March 2012, it was up to 22.5. Back in August 2011, when my PSA was up to 7.8, I had another biopsy that was mostly negative except for one 'atypical' spot in the left lateral base. My cryo had been done on the right hand side, by the way.
My urologist had me take a PCA3 urine test but it came back as 10.7 NEGATIVE meaning a low probability of cancer. So we decided to wait six months.
I imagine my shock when I found out it was up to 22.5! Urologist said it was 'weird' and 'troubling' but decided to try a 15-day course of doxycycline in case it is due to an infection. I am about midway through that now and will have another PSA test on 20 April and will see the doctor again on 2 May. In the meantime, he is sending my biopsy samples from August for the new test by Mitomics where they will look at the mitochondrial samples to look for signs of cancer.
The urologist said that IF the doxycycline has no effect or IF the Mitomics test come back showing cancer, I will either have to get radiation or total cryotherapy. Either way, I am sure to have worse ED if not total ED. Bummer!
At this point, assuming that my test results are not good, I am inclined to have radiation treatments (external) because I dread the thought of all the tests prior to cryotherapy. I will update you sometime in May.
Well, a lot has happened since my April 2012 update and very little of it (except my son getting married in June) has been good.
First, let me start with the Mitomics test. They apparently only tested the samples from the left side, presumably at the instruction of my urologist. By the way, my insurance company (BCBS) refused to pay for the test and said it was 'experimental'. So, if your doctor suggests it, be sure to check with your insurance company first. Anyway, as for me, the Mitomics results came back as 'negative' for cancer. That, in combination with my low PCA3 score, indicated a low probability of cancer in the prostate. So far, so good! Right?
Alas, that is not the end of the story. It would appear that my focal cryotherapy in July 2010 actually did what it was supposed to do and got the cancer. However, my consistently rising PSA seemed to baffle my urologists. My PSA rose from a low of 2.2 in September 2010 (after the focal cryotherapy) to a whopping 22.5 in March 2012! So, while this obviously concerned them and me, I guess it never occurred to them that my cancer had micrometasized BEFORE my cryotherapy and had been growing unabated. Out of fairness to them, a bone scan at the time did not show any cancer in the bones but, as we know, common bone scans do not show metastases until they are much larger. By then, sadly, it is usually too late. Regardless, the urologist kept thinking my PSA was due to prostatitis so he tried another round of doxycycline but that only brought the PSA down to 18 in April. This was not enough of a drop to satisfy the urologist so we decided to try yet one more 30-day course of doxycycline. So, I had another PSA test in May but it was back up to 22.3! I asked LabCorp to send me the results because I did not want to wait until my next appointment with the urologist to get the results.
I don't know what the urologists would have recommended had I kept my appointment but I had already lost faith in both of them. As far as I could tell, they were clueless. Meanwhile, my PSA (and presumably my yet undiscovered cancer) was growing merrily along. Since I had been having some vague symptoms (right hip pain, lower abdominal pain, and groin lumps), I decided to take matters in my own hands and made an appointment with a medical oncologist. She was a not a specialist in prostate but she was close to my home and her ratings were good as far as I could tell so I decided to give her a shot. I had an appointment with her on the 1st of June and that's when it hit the fan.
I gave her copies of all my tests beforehand, hoping she would review them before she met with me. I don't know if she did or not. Nonetheless, during my initial interview with her, I told her about my pain symptoms and she immediately grew alarmed and scheduled me for a PET/CT (F18) the following Monday. Just as an aside, BCBS balked at paying for this test too and is demanding additional information while my claim is 'under review'. The PET/CT test was not exactly pleasant but it was not quite as claustrophobic as my 'open MRI' in 2010 had been. It was still a little daunting for me (I'm a big wimp and very claustrophobic). I had to drink two glasses of a disgusting liquid and then I had an infusion of the contrast agent (F18) before the test. The test itself took a little less than an hour and you have to lay perfectly still with your hands above your hand. But, all in all, it wasn't too bad because the tunnel is less confining than an MRI.
Three days later, I had the followup appointment with my oncologist (Dr. Isabella Martire). I could see on her face that the results were not good. She tried to show me the DVD of the PET/CT and where the spots of cancer but I was too numb to get much out of it. The net result, though, was that I had cancer in my sacrum (tailbone), my ileac wings, my right femur, and in three places in my spine (L4, L5, and T10). Everything else seemed to be okay and even my prostate was 'normal'. It did not show any cancer! The bone mets were now the concern. She sent me for a hip x-ray but that did not show any obvious deterioration. Dr. Martire decided to treat me right away with quarterly shots of Lupron and monthly infusions of Zometa. I got my first of these on the 8th of June 2012 and have had two subsequent infusions of Zometa since. My next Lupron shot will be either in September or October (I'm not sure if it is the 3-month version or the 4-month version). Regardless, prostate cancer that has metastasized as mine has is NOT curable. All they can hope to do is slow it down by starving the cancer of its main source of food, testosterone. That is the purpose of the Lupron. The Zometa is recommended to minimize bone loss. I also decided to take Salvestrol Platinum (based on the enthusiasm of its discoverer, Prof. Gerry Potter who also happens to be the guy who invented Zytiga). Also, based on my own research, I have started taking a calcium and Vitamin D supplement because Lupron tends to reduce calcium.
The Lupron is doing its job so far. After only one shot, my PSA was down to 1.3 by the 3rd of August and my testosterone was 25. My DHT was 'less than 5'. I have no idea about my baseline testosterone or DHT levels since no one ever thought to measure them before. In fact, I had to ask the oncologist to test my testosterone and DHT! These, along with PSA, are the key measurements that any doctor should know enough to measure on a man being treated with a hormone-suppressant! I am not very confident in the medical profession and strongly recommend doing your own research because -- at least in my case -- you have to tell doctors what to do instead of the other way around.
Lupron is effective but it is not without side effects! Again, my oncologist never explained the side effects to me and didn't even give me the data sheet to read. From what I have read, every person responds differently to androgen-suppressant therapy. In my case, I have hot flashes (not unusual), loss of libido (not unusual) and fatigue and depression (also not unusual). I can live with these side effects. In fact, the loss of libido is not such a big deal because my wife never liked having sex with me anyway and seldom, if ever, offered. I actually think she is happy we no longer have sex although I know she is worried about me dying from cancer.
However, the one side effect that is really distressing to me is the frequent palpitations (a feeling that my heart has flipped over in my chest). It really started to get bad in August (two months after the Lupron shot) and has not abated since then. My own research shows that Lupron can cause palpitations in a small percentage of people and I am one of those. I just hope it is not a serious side effect that will cause me to stop the Lupron prematurely. I will ask at my next appointment this Thursday, 6 September 2012. I also plan to tell her that I want to do the intermittent ADT route but will probably need to get at least one more shot before that would be even considered.
Well, that's my update for now.
I have been getting 4-month shots of Lupron and monthly infusions of Zometa because I have metastases to the sacrum, ileac wings, right femur, and several areas of my spine. I have also been taking Salvestrol Platinum since July 2012. So far, I have had two Lupron shots (June and October 2012).
The treatment is working so far and I assume the salvestrols are aiding in that. My PSA has declined from 22.3 in May 2012 to a low of 0.5 on 29 November 2012. I was taking 6,000 points of salvestrols but reduced the dosage to 3,000 points a week ago in order to save money. Time will tell if the Lupron + Zometa + Salvestrol Platinum continues to keep my PSA suppressed.
So far, so good!
After three Lupron shots and monthy infusions of Zometa, I convinced my oncologist to let me try intermittent therapy. She wasn't happy and argued against it but finally she conceded. So after my January 2013 shot, I did not get another one for almost nine months. For awhile, my PSA stayed below 1. However, during the summer, my PSA started to double very quickly and I was starting to have new pains in my butt (believe it or not) that I had not been having previously. By October 2013, my PSA had risen to 3.3 and because of the pain I was having, we restarted the Lupron shots. I had continued with the monthly infusions of the Zometa all along. My PSA went from 3.3 in October, to 1.1 in November, to .7 in December, and to .5 in January. I will have my next Lupron shot on 7 February 2014. So far, the Lupron seems to be doing the trick. Also, it is obvious I was not the best candidate for intermittent hormone therapy because of the aggressive nature of my cancer (Gleason). I did get a reprieve for almost nine months and I am thankful for that. I was able to save a little money and a few side effects for a short time.
In summary, my current treatment of quarterly Lupron shots and monthly infusions of Zometa seems to be working. I hope and pray that they will continue to do so in spite of the financial burden.
In my February update, I neglected to say that my original Gleason score was 8 and this was the reason intermittent therapy was not appropriate for me.
Wow! I can't believe another year has passed since I last updated my story. First, let me say that I was saddened to hear Terry Herbert had passed. Terry was heroic in his personal fight and helped many people along the way. This site is a prime example. He fought his cancer bravely and died under his own terms.
Not much has changed in my own case. I am still getting quarterly Lupron shots and monthly infusions of Zometa. My PSA is going up so a change in treatment is in my future. My oncologist is conservative and likes to 'stretch' each treatment for as long as possible before moving on to the next. We both know that my Stage IV prostate cancer with metastases to my sacrum, ileac wings, and several spots on my spine is not curable (at least not yet). Some people like to throw everything they can at the cancer while others, like my oncologist and me, prefer a more conservative approach. In my case, the idea is to keep the cancer at bay for as long as possible and to minimize any pain or side effects. If there were a magic cocktail that could actually cure the cancer, I'd go for it. As it stands today, there is no such concoction so I plan to try one treatment at a time until it stops working and then move on to the next.
I did try salvestrols for six months or so but they were expensive and did not seem to make much difference so I stopped. One of the side effects of Lupron is that it tends to increase glucose. I was pre-diabetic before I found out I had prostate cancer and the Lupron has just made it worse. I was already taking a statin (atorvastatin) and Lovaza for high cholesterol and triglycerides. Some research has shown that a diabetic drug, metformin, has some anticancer activity along with reducing blood glucose levels so I convinced my family physician to prescribe it for me. It's too soon to tell if it will have any effect on my PCa but I'm hopeful. I'm confident, at the very least, that it won't hurt. So, in addition to my usual Lupron shots and Zometa infusions, metformin is the only new thing I've tried so far. Some people have stomach issues (constipation, diarrhea, stomach cramps, etc.) with metformin so I asked for the extended release version and have not had any problems so far. Then again, I'm only taking 500 mg once a day. Stronger doses may not be so tolerable.
As you can see below, my PSA has been increasing lately so my oncologist will probably add bicalutamide (Casodex) in the next few months. I may ask her to switch me from Lupron (an agonist) to Degarelix (an antagonist) to see if that makes a difference. It may be worth a try although I'm not looking forward to monthly shots in my stomach!
So, that's my update. I hope someone finds it useful.
After my last update, my PSA continued to climb until it reached a high of 8.09 in August 2015. In September 2015, I started daily bicalutamide (generic Casodex) and it brought my PSA down for a time. It got as low as .90 but seemed to hover in the 1.10 to 1.30 range. However, in June 2016, my PSA had climbed again to 1.90 and my testosterone was up to 53. I believe this meets the definition of 'castrate-resistant'. I had my quarterly Lupron shot and Zometa infusion the same day I had my blood test. If my PSA and testosterone do not decrease in July, my guess is the next step will be to stop the bicalutamide to see if that makes a difference. Apparently, you can experience a 'rebound' once bicalutamide is stopped with a resultant lowering of PSA. It's obvious that my prostate cancer has found a way to feed itself. I will talk to my oncologist in July to determine the next step. She will probably recomment Zytiga or Xtandi but I don't think I can afford it even with insurance coverage of 80 percent. Unless I can get financial assistance, I will have to do without and probably go straight to docetaxel (chemo). There are not many options avaiable ...
I also had a kidney stone(s) since my last update. It resolved with medication. However, they did a CT and cystoscopy and found a bladder tumor. I had it removed in May 2016 and the pathologist graded it as low grade urothelial carcinoma without invasion. That was a good thing. However, these tumors tend to recur so I have to get repeat cystoscopies every three months for the foreseeable future.
I hope someone finds this information useful. It's not a very good report but that's where I am.
Jake's e-mail address is: firstname.lastname@example.org