About a month ago I had a routine physical and got flagged for a high (5.6) PSA. The initial DRE (Digital Rectal Examination) was normal. Based on my age and clean DRE, my regular doctor said it was probably an infection, but referred my to a urologist based on the PSA. The urologist was all business and after he did a DRE, he said that he felt a little something "on the edge", and that together with the PSA he scheduled a biopsy. 12 cores and five days later, he called me on March 1 and said that he was sorry to tell me that one of the 12 cores had cancer, and that three others had abnormal formations. He said Gleason 6. Today I had a CAT scan and bone scan, and will find out the results in four days when I go in for a consultation.
I told my parents, but was taken aback when my father strongly recommended I do nothing. I was telling him my story when he interrupted and said something to the effect of "don't let them talk you into a needle biopsy and procedures, they're just after $$$". Then I told him I did in fact have cancer, and he was still dismissive of any treatment. Hell, I'm 49 and although I would mourn a substantial decrease in potency, I don't want to die before 75 from this cancer. Regardless, Dad did convince me to set up a second opinion (Cleveland Clinic) and I know not to rush into anything. (Of course I did get laid off two weeks ago and only have six months of COBRA - when it rains it pours.) Emotionally, I'd still like to meet a significant other - I'm divorced but would like to attract a women....Also and not the least, I am dreading telling my 13 year old son who lives in another State. We've been living apart for only 2 years, and it breaks my heart to think of the pain and worry this would/will cause him.
This is my initial post. I would appreciate support from other men, especially any who are without significant others, but haven't given up hope yet.
Well, thanks to YANA and the feedback I got back in March, I slowed down and got a second opinion.
This second doctor said that, although I was young, he would support watchful waiting, however, I needed to come back in and do a second PSA (I insisted on a free PSA too. (My first doctor said I was "playing with fire" and was pushing me to do something immediately - this made me quite uncomfortable, especially as I began reading up on the subject and became aware of the myriad of options). Also, the (2nd) doctor convinced me to order a new-fangled test - Prostate RX - that scrutinizes my original 12 biopsy cores and will indicate whether or not I am high risk or low risk. (Of course I am considered intermediate now). [I cannot find a reference to this test].
I have an appointment on Monday, four days from now, and I will report back on 1) my Prostate Rx results and 2) the second PSA test. I have been lectured by the good doctor that if my PSA is already up to 7.0, then the velocity is too high and he'll recommend I do something. If that's the case, I am leaning towards radioactive seeds rather than radical prostatectomy. My father, who turns 80 soon, has had a PSA as high as 20.0, steadfastly discourages expensive procedures and emphasizes that most men have some form of Prostate cancer.
I will report back next week on my newest PSA and my second doctor's recommendation.
My urologist did a DRE, found nothing and noted that my PSA is now 5.7, up from 5.6 seven months earlier. [Given the inbuilt variance in PSA results, this should not be considered an 'increase' - see PSA 101] Given my relatively young age, he has strongly encourage me to have my January biopsy diagnosed by "Prostate Px", a lab that does a battery of tests. It's quite expensive ($3,000USD s/o insurance) but the good doctor reasoned that if I was set on continuing Active Surveillance, then I should delineate between benign and agressive prostate cancer.
As is, 3+3 Gleason is considered intermediate. [Gleason Score 6 is in fact the 'entry level for a diagnosis of prostate cancer. at this level money would be better spent on getting an expert opinion on the grading of the pathology samples] I will update my info once the results for Prostate Px become available.
My story went inactive, but with the benefit of living through the ups and downs of the initial few years, I am offering my updated story here.
Wow, I can not believe it is coming up on three years since a routine physical branded me as a cancer patient. My first Florida urologist was sooo eager to do an expensive procedure. Since late 2010, I have had multiple PSA tests, once it went as high as 6.0, but it has stayed in the 5.5 to 6.0 range. My New York doctor, (and my second opinion in Florida) were and are supportive of active surveillance. I am now due for another PSA, and actually another biopsy. But the first biopsy was tough going - and I think it is too invasive - so I may decline another biopsy given the lack of velocity in my blood work. Last blood test was four months ago, and I believe it was 5.9. I don't think about it daily, maybe not even weekly. I've got other challenges in my life!
Importantly, after my initial diagnosis, my second doctor recommended the Aureon PX Score (Aureon Laboratories - out of Yonkers NY). Insurance did cover the $3,200 cost - but it was tough sell to get it covered. This is technical, but the report reads, "Quantitative Features from Patients Immunofluorescent Sample" 1) Relative Dynamic Range of AR: 1.14, Relative Area of Epithelial Nuclei KI-67 Positive: 0.03, Average Edge Length of Epithelial Nuclei Minimum Spanning Tree: 15.23.
Supportive Features Summary: Morphometric analysis of the prostate needle biopsy - in the sections evaluated - is consistent with a well differentiated tumor supported by low to intermediate feature values that indicate spread of epithellal cells behond gland units, as well as histobiometric immunefluorence (IF) data (medium "minimum spanning tree" features value, a feature suggestive of nuclear and/or gland dispersion). Quantitative IF biomarker results identified a low level of expression for the androgen receptor within tumor epithelial nuclei, and a low to moderate area of tumor cell nuclei expressing the cell cycle marker Ki-67......Clinical correlation is suggested.
On a scale of 1 - 100, my disease progression score is 13 = favorable pathology.
Given this second opinion on my one cancer core (of 12 taken), my second and third doctor are comfortable with active surveillance. I am very thankful for the support of THIS WEBSITE for counseling me not to decide on surgery - radiation treatment during the scary first 1-3 months after initial diagnosis. I might eventually need an expensive procedure, but it is clear that in the US, there is an active campaign by some in the medical profession to scare the sh*t out of you and your partner to rush one into the DaVinci Robotics, Cyberknife, etc..("the bad news is you have cancer, the good news is that we caught it early"..- What a crock !!!.. I get angry when I hear radio advertisements in rural New York imploring women to have their partners go in for a PSA test. I would have been better off never getting the PSA test in the first place. Having said that, the second, detailed analysis of my biopsy core gave both me and my doctors significant comfort in following active surveillance.
In reality, my cholesteral level and risk of heart disease are more serious matters for my personal long-term well being. Off to Yoga tomorrow AM !
- Stephen 1/2013, coming up on my third year since diagnosis...
I am less than a month of my forth anniversary since diagnosis at age 49. I moved from the United States to China in April, and a few days ago I traveled to Shanghai to have my PSA and free PSA checked. It's been 14 months since my last PSA test, so I am overdue.ĦĦI am doing active survellanice based on a favorable high tech analysis of my one and only biopsy (Aureon PX score which I mistakenly called a Aureon RX score in a previous post) which put my doctors at ease with me doing active survelliance.
I went to a clinic for foreigners in Shanghai and made sure that they could give me a PSA score and not just a "positive" or "negative" reading. I met the English speaking GP and later the Chinese language only Urologist. I gave them my history of mutiple PSAs over 4 years, holding steady between 5.0 and 6.0. The Urologist was un-impressed. He did a DRE and said it was "hard". He said I should be on medication to slow my prostate. He specifically recommended flutamide (?). Also, he recommended complete removal of my prostate, and then if not that - get this - he recommended removal of both of my "balls". (The GP did not know the word "testicle"). For some reason, YANA has never reported that option!! (Oh yes we did - see Orchidectomy) Anyway, it is clear they want to reduce testosterone via drugs or castration. Not my favorite options! So I have to wait one week for my PSA results. I am telling my self that if it is below 8.2, I will stay in China and continue work. If it is above that level, I will seek treatment, perhaps Brachytherapy in India. (I have no USA medical insurance and don't know how I'd get on ObamaCare). If it is above 15, I'll quit my job and return forthwith.
Anyway, over the past four years, I have not had symptoms and have not lost much sleep. However, the GP called this morning and told me that my PSA was high (no kidding), and said he had no further information as they send my blood to a specialized place to get a reading. I don't know why telephoned me at all - it just increased my anxiety. One good thing here in China, I got a CT scan of my prostate along with the PSA and free PSA test. Cost of the CT scan? - 500 RMB or under $100. Then again, like the USA, I am very wary of doctors recommending radical treatment for low grade prostate cancer.
I'll update again after I get my PSA results.
Well, my journey continues. My PSA performed in February in Shanghai came back at 8.6. As the doctors in China advocated surgery ("we want to cut off your balls") and hormones, I felt it best to seek out treatment in the USA. In May I returned to the USA, and got another PSA an MRI, and a second biopsy, the first one since my initial biopsy four years ago. The biopsy was quite painful, and the urologist also went through the trouble of measuring my gland in anticipation of further procedures. A week later the doctor tried to let me down easy by saying, "well, your cancer has not gone away", then showed me that all of my cores were cancerous - mostly 7s, and also one now a Gleason 8. I was in shock, jumping from 3+3 to 4+4 in one fell swoop. PSA went from 6 to 8.6 to 9.8 over two years.
I was advised that given that I no longer had early stage PS, that a "dual approach" was the standard protocol. The doctor went through my options and told me that after surgery, they could put a flexible rod in my penis for erections (the location of the Gleason 8 tumor was too close to a critical nerve, and he would not avoid severing it in order to prevent it from getting to lymph nodes) and he went onto list the other side effects from surgery. Then he mentioned EBRT and hormones, or EBRT plus Brachytherapy. He said that, ideally, I should go on hormones for three months to shrink my prostate, then do Brachytherapy. But as I live in China, staying in the US without work for over six months was a considerable hardship. Finally, he did say that I could opt for 5 weeks of EBRT, followed by Brachytherapy - or about three months from the time of my initial meeting to two weeks after Brachytherapy.
A week later I met the radiation oncologist who was extremely nice, and said right off the bat that I was not "foolish" to try Active Survalience, as the odds are ostensibly in my favor. However, I lost that wager, and now I had to get immediate treatment. Without treatment, odds of surviving 10 years are 50-50. And I am 54. As I felt that I had F**ked up by not doing something four years earlier, the doctor's support for my active surveillance was really appreciated. Furthermore, the radiation oncologist said that he thought he could cure me, and also I had a very good chance of retaining sexual functions.
So now I am spending my summer vacation getting daily EBRT for 25 sessions. Ten days after that ends, I'll get the seeds. Two weeks later, I'm off to China again. Although I am already feeling a little tired, I am told that as I am young, fatigue should not be tremendous this fall, during the three or four months that the seeds will give off radiation.
My one true mistake was waiting four years for a second biopsy, and only relying on PSA's in the interim. I should have been able to catch the progression at a 7, and not a Gleason 8. I should have gotten a second biopsy at my second year anniversary at a minimum. So watchful waiting or AS is a risk, and though I may have been unlucky in that it has turned aggressive, I am thankful that I have a second chance and should, even in the worse case scenario, live another 15+ years.
As an American, I was uninsurable once I was diagnosed with cancer four years ago. Obamacare gave me back my insurance. Through today, halfway through EBRT, my bills are already close to $100,000. With Brachytherapy, I would expect the bill to reach about $200,000. As I don't have that kind of financial resources, it is not a stretch to say that the Obamacare, which passed into law by one vote, may have saved my life. (Then again, the Chinese offered to castrate me both chemically and surgically for under $5,000). Over the years I and my employers have paid hundreds of thousands of dollars to health insurance companies. Now that I have a serious illness for the first time in my life, I am tremendously relieved that the insurance company can not boot me. I'm am sure they would if they could.
Clarification on my dual therapy.
I am through 17 sessions of EBRT, only 8 more to go. My doctor told me I will be getting Palladium seeds as those are more intense than the iodine. This is necessary as I am not getting hormone therapy, so he explained that I am getting a wide beam EBRT plus stronger seeds to push for a cure. He also clarified that I am now T2B, advanced PC, Gleason 8.
I completed 5 weeks, 25 sessions of EBRT followed by 108 seeds Brachytherapy (Paladium 103) just over a year ago. My PSA dropped from a high of 9.80, so that's good news. However, 3.56 is a long way from zero and I do have side effects that seem to decrease than increase. I can't drink more than a pint of beer, and take an alpha blocker to help flow. Maybe because of the reduced beer intake (or pc just "agrees" with me) I've lost 25 lbs. I return to the hospital in February, hopefully I can continue to avoid ADT. Sex is very good with plenty of Cialis. Absent the meds though,,,,,highly questionable....
It has been 17 months since my EBRT and Brachytherapy treatment. My bladder control is improved considerably, flomax helps alot and I take it a few times a week. If I eat spicy food without flomax, urination can still be a problem. My erections are fairly weak, but with 20 mg of cialis I am able to enjoy a full sex life. Without ED medicine, I would suffer significantly.
I live in China and I take a PSA test every 3 months. My PSA score, which had been almost 10 just before EBRT and Brachy has dropped into the 3 range. Two weeks ago, it climbed a bit to 3.95, and frankly, I was worried as it seemed like a second bounce and it had been as low as 3.06 before. But I flew back to the USA two days later and had another PSA done at a USA hospital - this time it came in at 2.58!! So go figure. The doctor said that even 17 months later, it is still too early to tell if I have been cured. It looks like it may take a few more years to drop down if I am fortunate.
I was diagnosed almost six years ago and did active surveillance until my PSA spiked four years later. With the benefit of hindsight, I would have done Brachytherapy right away when I was Stage 1, gleason 6. I think I am lucky, but I have had to deal with managing Gleason 8 and a predicted 80% cure rate rather than 95% plus. I am glad I have avoided hormone treatment thus far.
It has been two and half years since my double radiation treatment of EBRT and Brachytherapy. I was advised/warned at the time that it was unconventional, but I wanted to avoid ADT side effects. My 5.60 Gleason 6 first detected in March 2010 had progressed to 9.20 Gleason 8 in May 2014.
After 25 sessions of EBRT, and before Brachytherapy, my PSA spiked to 13.59, then ten weeks after Brachytherapy dropped to 4.20. It further dipped to 3.06 at six months after treatment, but then gradually climbed over the next year to 3.95. Since then the news has been very good and over the most recent 12 months, by PSA has dropped to 2.50, to 1.27. to 0.95. So my PSA bounced then dribbled down over the course of 2 and a half years.
I've heard prostate cancer, and all cancers I guess for that matter, described as either turtles, rabbits, or birds. If the cancer and slow moving, like a turtle, no treatment is often best, especially if we're 70 years plus. Rabbits are initially slow but have the potential to jump out of the yard and metastasize. Catch them and treat them if you can (I'm a rabbit). Birds fly away and can't be controlled. Sorry.
As an American, I have to give a shout-out to Obamacare letting me get affordable health insurance with a pre-existing condition. Cleveland's University Hospital provided excellent treatment at the cost of a few thousand in deductibles. I could not bear to look at my actual USA medical bills; fantastic calculations in excess of $200K or $300K. In contrast, in China they recommended orchidectomy for about $5K. Hmmmmm.
Now, especially with a bit of ED medication, my wife of 10 months and I are very content. The only real drawback is that I can not intake liquids as much as I like. Either I hydrate fully and go to the bathroom frequently and in the middle of the night, or I am perpetually a little dehydrated. I get kidney stones, so I have to take care to hydrate.