Medical insight, personal stories and humor from a urologist who has been where you are now.
Here I am, an MD colleague (pathologist) from Denmark, 51 years old, four days after having my prostate biopsies, and just released from hospital because I was unfortunate enough to get an infection from the biopsies. I browsed the web and came across your fabulous site. I haven’t even had my diagnosis yet, but I have a strong suspicion what’s awaiting me at the follow-up (I chose not to be my own pathologist). Reading your diaries on the website is just like reading my own exact thoughts written down by you. It has given me great relief and for that I just want to thank you very much. Although I still hope that I will not have to make “the decision” I want to get hold of your book ASAP.
By the way it’s really weird but I am also crazy about Zappa, fly-fishing and my brown Labrador.
What a pleasant note and thanks so much for your input. I wish you well on the biopsy…here’s hoping it is negative. Again thanks for your kind remarks and I appreciate your interest in the book. John M.
The doctor recommended the Patrick Walsh book & The Decision wasn’t available at Barnes & Noble so we picked up the Walsh book. I tried to read the book last Thurs to Monday as the follow-up appt was yesterday & we just pretty much got the news (his biopsy was 11/11/11 same day as a cystoscopy I had earlier, same doctor. My husband is only 54 but I know he’s reeling from this. He stubbed his toe in our home and broke it a month ago. When he went for a follow up last week, he mentioned to a radiologist that it seemed to be healing slow, the radiologist quipped, “Well, that’s cuz you’re old.” What’s wrong with people?
Dr. Mc Hugh, I thoroughly enjoyed your book exerpts. My hat is off to you for being so open about your experiences and how beneficial your book will be for others with prostate cancer and surgery. This opened my eyes wider about the internal and external pain patients go through with prostate cancer. I appreciate the humor you have so talentedly incorporated in such trying of times. I look forward to reading the entire book! dm
High PSA and positive biopsy
uncorrectable vision loss in one eye. corrected with avastin, a drug that blocks VEGF, vascular endothelial growth factor. This happened to me during the three year period that I failed to check my PSA every year. PSA was rising during this time to a 5.5 measured in 2009. The growth factor that was causing my retina problem also is produced by prostate cancer cells as they are advancing to other sites. The same drug avastin is currently being tested in a large study with another drug taxotere for treatment of prostate cancer. The point is if you have vision problems, check your PSA before you check your eyes. I would have caught my prostate cancer while my PSA was about 2 or 3 instead of waiting until it was 8.5 in 2010.
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I was diagnosed about a month ago with Gleason 7 4/12 cores positive, psa 4.1. I’m 57 in good overall heath. I just read your book via Kindle (thks for making that available via download) and you make a very compelling argument for surgery. I’m curious, if you had to make the decision today, would there be any other therapy that you would consider?
The overall consensus of urologists I have spoken with is for surgery; of course they have not mentioned the potential side effects. From my own research, the older you are the more potential for urinary and ed issues. From your experience, what level of success (i.e. normal continence and minimal ed) have you seen with men in my age bracket (assuming good surgeron, good health prior, etc.)?
All the options are open to you by virtue of your health and specifics of your disease. I was somewhat similar to you , a bit younger, but similar other stuff. For me, I boiled it down to what I call “cure first person.” I did what I thought would be the best thing for the cancer “damning the torpedos” with the potential for the complications.
So I’d advise to really consider what is most important to you…cure vs. ease of treatment….and go from there. I had the robotic prostatectomy, leaked for three months however ultimately am continent (except for wine) and my sexual function (and I am not kidding) maybe better than before surgery but took 18 months to get there. So…I think the reason urologists are recommending surgery is that you are young and they feel this gives you your best shot at cure with options if the PSA one day does rise. I hope this helps…read the part on the Kindle about how I gravitated to the decision…in retrospect it was about what I thought was best for cure. I wish you the best, that was a good and fair question…with a little luck you get the “trifecta.” JM
Hi Doc! My husband was recently diagnosed with prostate cancer. Gleason 9 & 7, 10 of 12 cores positive and psa = 55.4. Scans show it is metastatic. Pelvis. I’m scared!
Cindy, I just found this blog and wanted to share my prostate cancer experience. I have never done this before.
I was 49 when I was diagnosed with advanced prostate cancer. My PSA was 198 at the time it was caught during a routine exam for a wrist surgery. My gleason scores were all 9’s and 10’s with each biopsy (13 in total). I met with several urologist and oncologist (15 in total) and got very different advice. The cancer was outside of the prostate but was miraculously not in my bones. I after meeting with the best experts I could find (from Cedar Sinai, USC, Loma Linda and Stanford) we decided to take a very aggressive approach which at the time was very outside the norm. Historically, younger men at my age and my PSA scores have aggressive cancer and the life expectancy was largely dependent on well the Lupron and Casadex is effective.
After the research I did with all the Doctors we met with, my wife and I created our own aggressive treatment plan with our team we assembled. The top urologist who was at USC and now the dean of urology at Stanford University, Christopher Rose (expert radiologist) in the Beverly his area, and Mitchell Gross who is a specialist in prostate cancer research and an oncologist who was with Cedars and is now at USC.
I was immediately put on Lupron and Casadex. After a 3 months of months my PSA dropped to under 5. I started Chemo treatments for 6 weeks, had a prostectomy and then very targeted radiation treatments for several weeks. I feel I had as good as experts you find anywhere with all my treatments. All of these treatments were completed within the first 8 months of diagnosis.
At this point I will be 54 years old in November. For the most part I have fared very well. I have been on intermediate hormonal treatments, my PSA has below 1 for 4 years. Over the past 6 months the Lupron has not been as effective as my PSA started to climb to 25. I am now on Casadex and Lupron my PSA has dropped but I know I will be looking for newer treatments out there. One treatment that I have read about that is working well for advanced prostate is Zytiga. This will likely be my next treatment.
When I had my surgery (in 2007) they removed about a 1/3 of bladder along with the prostate and semi-vesicals. The Prostate Cancer was in the margins of my bladder which meant it would likely be a terminal situation. I now have had reoccurring cancer in this area that has been cleaned out a couple of times. They also had to put a stint in through my left kidney because I was getting some blockage near the base of the bladder. Over the past 5 months I have had to use pads because of incontinence. I will likely get on Zytiga in the next few months. My research tells me prostate cancer is the one of the most curable cancers to have if you catch it within the prostate; this was not the case for me.
For me I am in a war that I will not necessarily win so I battle it a day at a time living for another day. My cancer is something I deal with and think about every day. I have sad moments, happy moments, difficult moments and moments of gratitude for the blessing I do have. Though your prognosis is difficult your challenge can give you things you may of never thought you could have. My cancer is in its own way as been a blessing in my life. I have been able to be part of seeing some of my kids get married and I have grandkids. I have enjoyed life in a here and now but have an eternal prospective. My prognosis is not good long-term but in our own quite ways we fight out battles with the support of friends, family and God
Hi Cindy Im a guy who in Feb 2006 had a PSA of 125 with a Gleason score of 9 and ALL cores positive and metastatic! Im living live to the full doing almost everything I ever did before being diagnosed. Of course like you I was so scared, I thought my life was about to end, i knew nothing about this disease so after 6 months of goinging through fear and anger I came to a place in my mind that was a form of acceptance – its me its my body let me see what I can do and so I travelled the World (UK, USA, Japan, Canada, Portugal, Bratislava, Austria,Switzerland, Barbados)to see how men with my condition were treated. It was whilst visiting the Princess Margaret Hospital in Toronto that I realised how care should be provided not just for the men with prostate cancer but also those who love their men (they had two rooms away from the rection one was called ‘Man to Man’ where men were sat around drinking coffe and sharing their experiences the other room was called ‘Side by Side’ for those who were supporting their men, they too have issuses around looking after their men) and in truth treatment options at that time were radiotherapy and chemotherapy or palliative and with massive side effects. That was when I started researching prostate cancer, I joined prostate cancer support groups although I found few men with my late stage cancer it was good to share with them and their wives/partners/children and so I set up the red sock campaign to share the knowledge I have gained about prostate cancer.
In the last 12 months new treatments for prostate cancer have become available and with more in the pipeline the reality is that we men have a better chance of survival than ever before.
Cindy it is a tough time and your husband is going to need every ounce of support and encouragement you can give BUT to be at your best you too need support so please look around and dont be afraid to ask for help.
In the six years I have lived knowing I had this cancer I have been on and off hormone therapy 3 times so for me it has been possible to keep my prostate cancer under control without radiotherapy or chemotherapy.
Thank you so very much for your encouraging words. We meet with an oncologist this Friday, so we will have a better clue as to what we are dealing with here. Thanks again, Cindy
Do you have an update for us at this time?
Yes…Stage 4 Advanced Metastatic in 3 different bone regions. Started Casadex 50 mg and had 1st hormone therapy injection 3 weeks ago. Go back for CT and Bone Scan on 5/9 and blood work on 5/11 and revisit oncologist on 5/11. Will then determine course of radiation treatment. Husband still feels really good and the doc couldn’t believe his bones are not hurting. Thanks….this really sucks!
Thanks for the update. My husband was diagnosed in July 2010 with a PSA of 12.6. He had the robotic surgery 11-10. His PSA never went to 0 after the surgery. When it reached .45 in July of 2011 he started 38 radiation treatments that he finished in Sept of last year. The first post radiation PSA was .75 then last week it was up to 2.27. He had a bone scan and CT that showed negative. The doctor seems to say we need to wait before starting hormone shots. My thinking would be to start it now before it did spread..but who knows!! We have to trust the docs. It is just a hard thing to deal with. My husband is now 59 ..how old is your husband. I hope you get a good report next month. Best of luck!!
My husband is 60. Too young 2 hav to deal with this. His appts have been moved up so I will post update in 2 weeks. Good luk to u and ur husband!
Thanks for your site, wish I’d seen it 2 months ago. Bad news was MRI guided Biopsy 4 taps Gleason 4+5 on all. Opted for “classic” surgery which seems to have worked well of course I’m only 4 days post-op right now. Good news was final path report, margins clear nodes clear.
I found your site by accident after looking for “bleeding around the catheter”. If you know someone who understands web coding you might get them to help out with more “keywords”. I do some but i’m not good enough to get this done. This might help folks looking for some , in my opinion, very helpful information
I want to get hold of your book ASAP. 🙂
By the way it’s really weird but I am crazy about Zappa to!!!
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