My story is an unfortunate one, but my journey has just begun. Keep in mind that for most of my life I have received all my healthcare at one of the most prestigious "Ivory Tower" teaching hospitals on America's west coast. I have also been very proactive about my health thanks to my wife and best friend of over 23 years who has a strong medical background. Although I had no urinary or sexual symptoms, I began monitoring my PSA closely and having regular DRE's in the early 2000's. From about 2000 to 2006 my PSA ran around 2.0 and I was told that I "had the prostate of a 20 year old", which is always good for the ego of a man of about 60 with a beautiful wife in her late 30's.
In 2006 I became distracted by another more urgent health crisis - I needed coronary artery bypass surgery. Although I had never had a heart attack and had no symptoms of heart disease, my older brother, who was an athlete all his life, dropped dead of a massive heart attack caused by a blockage in the left main coronary artery - the type of heart attack referred to as a "widow-maker" because you can't survive one. I passed all the non-invasive tests with flying colors, but my wife insisted on an angiogram because it was the only way to see for sure if there were blockages in any of the coronary arteries. Sure enough, my left main coronary artery was 75% blocked and I underwent an emergency double bypass that saved my life. From 2006 to 2010 I was so focused on following my cardiologist's instructions that I simply forgot about my prostate which had never given me any trouble.
In 2010 I resumed frequent (every few months) PSA's and DRE's, and my PSA levels were hovering around 4, but I was never referred to a urologist for evaluation and a biopsy. My internist claimed that my PSA was normal for a man of 71. I continued closely monitoring my PSA through 2011, 2012 and 2013 and the level continued to hover around 4 until August 2013 when it jumped from 4 to 9 in six months. My biopsy showed only one positive core with a Gleason score of 3+4=7. MRIs of my pelvis and abdomen showed that the small tumor was still confined within the prostate, with no lymph node or bone involvement and I was told I had Stage IIa disease.
I was given the choice of prostatectomy or radiation therapy (seeds, external beam radiation, or SBRT radiation), and was told that at my early stage of prostate cancer these treatments were equally effective (about a 90% cure rate), so I elected to have SBRT radiation. I completed the five (5) sessions of radiation in October 2013 and was told NOT to have my PSA tested for at least six (6) months because the results can be misleading while the prostate tissue slowly dies off over the first 12 to 18 months after treatment. However, I'm not the most patient person in the world and three (3) months later in January 2014 I had my PSA run. The result was about 5.5, and I was alarmed because I though it should have dropped more, but my Radiation Oncologist told me I was right on track, but to not have any more PSA tests for 6 more months, which would bring me to July 2014.
Despite the RO's instructions, I had another PSA run 3 months later in April 2014, and the result was about 6.5. I recalled what the RO said and wasn't too concerned. In July 2014 I had another PSA, and this time it was 12.7. Now I was really concerned, but the RO told me it was probably a "PSA bounce" and not to run another PSA until January 2015.
This is where my story becomes somewhat complicated and unfortunate. In June 2014, I fell while working outdoors, bruising my right hip and wrenching my right knee. I went to my primary care physician who ordered x-rays of my right hip and right knee. He told me that other than some mild arthritis, my right hip was not injured but that my right knee required further evaluation. An orthopedist advised against any knee surgery and ordered a custom made brace for my right knee.
On the second Sunday in September 2014, my wife and I were driving around together going to lunch and a movie. My wife was going through a large stack of my mail which I had neglected for several weeks, throwing out the junk mail and paying bills. She opened an envelope from my primary care physician that contained a letter to me attached to the radiologist's report from the xray of my right hip taken three months earlier in June 2014. The letter simply informed me of the mild arthritis of the right hip and advised me to get an orthopedist to follow up on the right knee. However, the radiologist's report contained not one, but two findings. The first finding was regarding the mild hip arthritis but the second finding that my primary care physician never told me about was a 30x30 cm sclerotic lesion on my right pubic bone. My wife read this report and was immediately concerned because she knew the potential significance of a sclerotic bone lesion in a prostate cancer patient.
The next day I had a nuclear bone scan and later that day we saw the RO who confirmed that I had three prostate cancer metastases in my right pubic bone, putting me at Stage IV, not Stage IIa. My wife and I were shocked and devastated. My wife asked the RO to pull up the images for the pelvic MRI performed in September 2013 prior to the SBRT radiation, and she and the RO looked at the images together. It didn't take a rocket scientist to see that the lesion on my pubic bone seen on the June 2014 x-ray was also visible on the September 2013 MRI. The RO had the MRI re-read by the radiologist, who confirmed that it had been misread in 2013 - that all this time I was Stage IV, not Stage IIa - and had not been receiving any ADT to control my disease. A September 15, 2014 PSA was 33 and a week later my PSA was up to 35. I was started on Casodex 50mg/day immediately, but could not receive Lupron therapy because I had a benign tumor on my pituitary gland that could infarct and hemorrhage from the sudden surge of activity that the first Lupron injection stimulates.
I had known about the pituitary tumor for 10 years and it was being checked by MRI every few years to determine whether it had gotten large enough to require surgical removal. After my Stage IV diagnosis, I had an MRI of my brain which showed that the pituitary tumor was now 17mm and must be removed before it starts pressing on the optic nerve causing vision loss. On October 17, 2014 a neurosurgeon successfully removed the pituitary tumor.
Since starting the Casodex on September 24, 2014 my PSA dropped to 15, which certainly made me feel more optimistic. Even though my pituitary tumor was removed, my Medical Oncologist still isn't 100% comfortable giving me Lupron, so he chose to use Firmagon (degarelix) instead because it does not cause a "flare" like Lupron does.
October 22, 2014 I received my first monthly degarelix injection. Here's hoping that I'll be one of the lucky ones who live more than 5 years with a Stage IV prostate cancer diagnosis. I'll keep you updated.
On October 18, 2014, just one month after being diagnosed with stage IV prostate cancer with 3 pubic bone mets, Roger had neurosurgery to remove a benign tumor from his pituitary gland. The tumor had nothing to do with his prostate cancer, and he would have needed to have it removed anyway because it was beginning to press on his optic nerve, but he couldn't start ADT injections until he had it removed because the initial hormone surge could cause a pituitary stroke, with life threatening results. The surgery went well but was very hard on Roger because he doesn't handle general anesthesia well and was still in shock after learning about his cancer.
Roger was placed on Casodex 50 mg/day within a week of diagnosis (it's safe with a pituitary tumor) and his PSA dropped from a high of 34 to 17 in just 2 weeks. He had his first degarelix injections on October 29, 2014. His testosterone levels dropped from about 900 to 18 in three days, and his PSA dropped to 13 within a week, which was really encouraging. The next PSA test is on November 28, 2014 when he gets his second degarelix injection, so here's hoping.
Roger has accepted the fact that our sex life is pretty much over as long as he has ADT, but we are both sad about this because intimacy has always been an important part of our 24 year marriage. His biggest concern was that he would suffer from severe hot flashes on degarelix but so far he has only felt a little warm at night. I just read somewhere today that hot flashes don't start until after 3 or more months on ADT, but maybe he will be lucky. We will update Roger's story as things progress, or hopefully don't.
Thank God, Roger's PSA dropped to 1.09 our weeks after starting degarelix, and we are hoping for a drop to undetectable or less than 0.5 when it's checked next month. It's sad that our sex life is over or at least "on hold" indefinitely, but life is more important, isn't it? Fortunately there have been no other side effects from the treatment.
Good news. PSA is down to 0.4 from 1.09 a few weeks ago - let's just hope it stays there because I have a lot of living left to do. I want to take a month long trip to Europe; I want to go to NYC and stay for a few weeks and enjoy theater, museums, great food and interesting people; I want to go to Yellowstone next summer and breathe the fresh mountain air. I'm not ready to die.
It's now been 7 months since my husband learned he had Stage VI with metastases to his pubic bone and began ADT. We are thrilled his PSA is now down to .03, and that he's not "sick" with this disease, but our lives have changed in ways I never imagined. We have been married for 24 years and I'm 23 years younger than my husband. He used to tell me I was "the sexiest girl alive" and we had a very active sex life right up to the first ADT treatment. We have not made love since then. I'm not upset by the prospect of a future without sex with my husband, but he is one of those unusual men who equates sexual desire with love (like women do), which was wonderful before the prostate cancer and ADT, but now, with almost no testosterone, he no longer feels any sexual desire. This has profoundly affected our relationship because making love was how he expressed his love, and now that he does not desire me, it feels like he no longer loves me. I know in my heart that he still loves me even though he doesn't "feel" it in the same way, but he doesn't seem to know how to express or feel his love in any other way. I don't care if we never make love again- I just want to feel like he still loves me. With ADT, we are convinced he has 5 to 8 more "good" years (he is now 76), and I look forward to every day we have together. I just wish he would act like he loves me. Does this make any sense?
Roger was diagnosed with Stage 4 with mets to his pubic bone (nowhere else) in September 2014, and I'm his wife of 25 years. Roger is very active, strong, and healthy appearing 77, and I'm 55 with no significant health problems.
Roger has been on ADT for 15 months now and his PSA dropped from a high of about 36 in October 2014 (it was rising very rapidly) to his nadir of <.03 in about June 2015. Roger's PSA remained at <.03 until November 2015 when it was .05, then .04 a few days later, then .05 a few days later and .06 after another week and .06 on December 20th. He is getting his PSA tested again on January 5th. His oncologist is looking for a trend. So far Roger's recent PSA results have not been alarming enough to convince the oncologist that Roger's cancer is becoming castrate resistant. When Roger saw the oncologist on December 20th he had a repeat (his first repeats) bone scans and MRIs, which showed no new bone lesions, no growth in the existing pubic bone lesions from the first scan performed in September 2014, and no signs of distant mets in any other organs or any localized spread to lymph nodes or tissues in the pelvis.
In my very most humble (but educated) opinion, when using lab tests sensitive enough to detect PSA levels as low as .03 (when a normal PSA can run anywhere from <1.0 to 4.0 depending on age and who is deciding what "normal" is) these tiny "rises" in Roger's PSA, when considering his excellent recent imaging don't worry me TOO much YET. After all, you need to consider the limitations of the machine to detect the difference between 0.03 and 0.05.
Also, since Roger's healthy adrenal glands are still making small amounts of testosterone, the slight increase increase in his PSA could be from the mostly dormant cancer cells "feeding" off his adrenally-produced testosterone. He's going to try giving Roger Proscar, a drug that stops testosterone from being converted to DHT, which is the active form of the hormone.
Well, let's see what happens when Roger's PSA is repeated on January 5th. If it goes up to .08 or higher, the oncologist will probably say it's "trending up" and we will try the Proscar first and see if that helps.
It's been quite a while since I updated Roger's cancer story and how his treatment is working. Keep in mind that Roger is 77 and I a young, healthy 55. Roger was misdiagnosed as a Stage 2 in about October 2013 and received SBRT radiation at one of the Ivory Tower teaching hospitals in Southern California, but when his PSA rapidly began to rise less than 6 months later and 9 months later it was higher than when he was first diagnosed, they re-read the initial MRI and admitted they had misread it- he was actually a Stage 4 in October 2013 with mets in his pubic bones and other areas of his pelvic bones (nowhere else, thank God).
He began treatment for Stage 4 in November 2014 at a different (and much better) major teaching cancer center and was placed on Degarilix and casodex then switched to Lupron alone after about 4 months. Unfortunately, after about a year, the Lupron began to fail (PSA rose from undetectable (<0.03 to 1.1 within weeks), and his oncologist added Proscar for a month (which did nothing) and then added Xtandi, which dropped his PSA back down to undetectable within a month where it has remained ever since (it's now December 2016). So, the Lupron/Proscar/Xtandi combo has been working well for 8 months now, and as long as it continues to work Roger will remain largely asymptomatic (no bone pain). But who knows how long it will work? Another 6 months? 12 months? 18 months? Nobody knows. Since it is not a cure, Roger has no intention of undergoing chemo because all it will do is buy him a few more months and make him so sick he will want to die.
The issue of the misdiagnosis at the first hospital and having received unnecessary radiation to his pelvis was a "Sorry, but no harm, no foul, right? You were a Stage 4 in 2013, so your outcome would not have been any different", but that's not entirely true. About 16 months, Roger began having a lot of difficulty passing stools, had a hard time sitting for long periods, and usually very frequently had blood in his stool of varying amounts. Since he had been told he had internal hemorrhoids a few years before the cancer diagnosis, he assumed it was his hemorrhoids acting up, but when to a colorectal specialist who looked inside his rectum with an anoscope and told Roger that he had chronic radiation burns in his rectum from the unnecessary radiation treatment. His blood hemoglobin had been slowly dropping from the normal male level of about 14-17 g/dL to around 11-12 g/dL. In about September of 2016 the colorectal specialist recommended a full colonoscopy, but the procedure had to be aborted after just a few due minutes because Roger was in extreme pain and bleeding excessively from his rectum (but the Doctor remove a benign polyp and got great photographs of the radiation damage). I don't know why they did not admit him to monitor his blood hemoglobin considering the amount of bleeding there was, but they sent him home to recuperate anyway. The following day he was very short of breath and too weak to get out of bed so we called an ambulance and he was admitted with a blood hemoglobin of 6.6g/dL- which is considered critically low and potentially life threatening. He was transfused with 4 units of packed red blood cells, which brought his hemoglobin up to just over about 10 g/dL. Fortunately we have more red cells than we really need, so as long as it didn't continue to drop it was safe to send him home 24 hours later. Roger will have low-grade rectal bleeding when ever he has a bowel movement for the rest of his life Any efforts to try to "fix" the problem surgically would likely make it worse because it is very difficult for radiation damaged tissues to heal normally. The key is to hope his bone marrow can replace the red cells as as or faster than he is losing then. Two months after that fiasco Roger's his blood hemoglobin is up to almost 13 g/dL, which is great. The other key is for him to use lots of Miralax to keep his stools as soft as possible to minimize any future bleeding.
So, the good news is that Roger's treatment with Lupron, Proscar and Xtandi is still working. Judging from the size of the lesion on his pubic bone seen on a June 2014 plain film x-ray taken after he fell and bruised his hip (his primary care MD knew Roger was a prostate cancer patient but completely ignored the radiologist's finding of a 3 cm x 3 cm sclerotic bone lesion on his pubic bone and recommendation for a bone scan) Roger has probably had slow growing prostate cancer bone mets for at least five years now, and other than just looking older like we all do as we approach 80, you would never know he had terminal cancer. He is still pain free and active, and the Lupron/Proscar/Xtandi combination could work indefinitely, or at least until he passes away from some other cause like a stroke or a heart attack.
RD's e-mail address is: donnamd2 AT earthlink.net (replace "AT" with "@")