The last year has been life-changing for me. I had sent out regular emails to family and friends during this ordeal and after realizing that several of my contacts had similar concerns about their health and prostate, I put together the emails here in one document hoping that some of this information might help someone you know.
This is a summary starting from pre-diagnosis (when I was trying to discover what the symptoms and my tests meant), eventual diagnosis, research I did to determine the best treatments, pre-surgery, surgery, post surgery, and follow up.
Feel free to talk to me about anything you wish, I want to help if need be!
October 26, 2014
You asked me to keep you updated so I want to let you know some health challenges that I am having, both meant to be informative and also welcoming to your suggestions and comments.
It was discovered back in 2004 that I had a higher than normal PSA count in my blood. This is a protein that is manufactured only by a man's prostate, and the lower the number the better. It started at 2.0, and has escalated over 10.0 for a number of years now. Anything over 4.0 is considered by most urologists as a positive sign of cancer. When mine approached 6.0 my urologist did a biopsy on me. (12 needles of specimen in a random ultrasound-led procedure, done thru the rectum with a "gun") All negative. That was in 2006. Then in 2008 when I had a PSA reading of 14.0 he ordered another similar biopsy, all results negative. Biopsies are quite intrusive and uncomfortable procedures with many side effects.
Another indication of cancer is a digital exam. All my digitals indicate normal. There is a urine test called a PCA3; two of them were done on me in the last three years, all again negative.
I have been taking two drugs to help with eliminating urine more fully, especially at night so not to disturb sleep so much (I still get up 2-3 times every night, even with drugs), and also a drug to help shrink the size of the prostate (however mine is not huge compared to many that have the common prostate condition known as BHP, non-cancerous).
Last month I had another shock. My PSA went to 35.0. This is really dangerously high, and my urologist got very anxious and overly concerned. He ordered an MRI on my prostate. That indicated some suspicious activity (they cannot figure out if cancer unless biopsied as of today's medicine technology) in the anterior apex region of my prostate. This area is unusual for this activity, and is usually considered more advanced cancer once it gets there, starting from other areas first. I went to U of M prostate clinic and they told me similar, they suspect cancer also.
I then got a third opinion last week at the Mayo Clinic. They also have agreed that this looks very sure like cancer. The earlier biopsies would not have shown this as it is in a position that is normally not looked at. With a PSA so high for so long, they think the only way to know for sure is to do yet another biopsy.
This one would be tougher. I must go under general anesthesia, and it is a two day process at Mayo in Rochester. Because of its location, much bleeding and chance of infection is present. Side effects will be more prevalent and last several weeks. Because of the difficult position that this suspected cancer is in, there is more danger of piercing other organs and nerve endings, therefore possibly harming the sphincter muscles, urethra, and colon.
As much as I do not want to have this biopsy, it seems that I must trust the doctors on this one and go ahead with it. The risks are that I have cancer that can spread, having no idea how aggressive it might be. It is probably curable with some challenging treatments and/or surgeries if there is cancer (very probable) but with lasting side effects. But the option is not doing anything and letting it grow, possibly dying prematurely because of it.
As of now, I am scheduled for this biopsy surgery on Nov 5-6 at Mayo. I am not excited. I have cancelled my annual SE Asia trip so far. I have two other major trips planned; to Peru for 3 weeks in January and PV, Mexico for a month from Feb 9 to March 10. It is up in the air what will happen with those trips as of now.
Once the biopsy has been done and I have recovered, I will know much more (hopefully) about what to do next.
Thanks for reading. If you wish to be off this information list, let me know, I will not be offended. Otherwise, I will keep you posted once I know anything more.
NOV 12, 2014
Good day everyone,
Continuing from my last email of Oct 26...
I was in Mayo Clinic last Wed and Thurs for exploratory surgery on the prostate as my PSA level in the blood was way out of whack and normal biopsies and other tests were not showing any confirmations of problems, yet it was highly expected of cancer. An MRI indicated existence of concerns in a very difficult and unusual area of the prostate. The recuperation process has been difficult from last week. Sleepless hours and excessive bleeding.
I was notified this afternoon by Mayo that I do have prostate cancer confirmed in both sides of the prostate, and medium aggressive at a "Gleason Score of 7". Needless to say, I am not excited about this, especially since they have been trying to follow this and find it for 10 years now. Finally a confirmation.
Now to decide what to do and when. I will have a consultation with Mayo Clinic again next Thursday, Nov 20, to go over options and learn more. I am also reading a lot about it. Thank goodness there ARE options.
I can update again after that Mayo visit. I welcome anyone that has experience in this area to visit with me about it. I feel confident that there has been lots of great research in the area of prostate cancer in the last few years, and that everything will be positive for the future.
Thanks for listening,
NOV 27, 2014
Good day everyone and Happy Thanksgiving. I certainly have so much to be thankful for.
Continuing from my last email of Nov 12.
As you know, I was diagnosed with intermediate aggressive prostate cancer (Gleason score 7, stage II). I am going mainly to Mayo Clinic in Rochester but getting other professional opinions as well.
There are luckily many options on how to deal with this, however, unfortunately it was discovered after this has grown in my body for several years so I must have aggressive treatments. A radical prostatectomy (complete removal) is the most well-known treatment and I am eligible for that considering my otherwise good health. It is a difficult surgery requiring (in my case) 4 days in the hospital and 1-1/2 months of little activity. There are many side effects that can be 1-2 years lasting or lifetime, those are some of the risks. The earliest surgery date would be in January.
I am also considering hormonal treatments (would be for 1-3 years) combined with radiation seeds and/or external beam radiation. Less invasive than surgery, some side effects but potentially not as many as surgery, and many hassles as it requires frequent trips back and forth for the mandatory treatments. Also there are some potentially long term challenges.
I have been talking to as many people as possible that have gone thru this personally. I have just joined two different support groups locally also, but most are not meeting until after the Holidays. If you know of anyone that is willing to share their story with me, I certainly would jump at that chance to talk with them so let me know.
The decision of how to proceed is ultimately up to me. Dr's provide information based on what they know, but there are many "unknowns" with this kind of thing, and they are all trying to "sell" what they are trained for. Everyone's body is different and prostate cancer varies widely with each individual case. Results are never guaranteed. It is a tough time for me. It will be better once I have made the right decision.
I have cancelled two trips so far. I was to be in SE Asia this month of November, and a 3 week tour on a small ship on the Amazon in Peru for January. Mexico is on the calendar for mid-Feb to mid-March but that may not happen either. :-( It is doubtful I will be able to attend my nephew's wedding in CA the end of January.
Thanks for all your kind thoughts and prayers, and I welcome any feedback you might have that will help me make challenging decisions.
612 702 5554
December 17, 2014
Hello family and friends,
I feel so blessed to have so many concerned friends. Thanks for being there for me! This is to follow-up from my last update of Nov. 25.
I am doing well. As you know by now, I was diagnosed with prostate cancer on Nov 6, after 10 years of following it and trying to find it unsuccessfully. Finally Mayo found it with an MRI-guided biopsy. I feel no pain, have no extra fatigue, and so far everything physically is quite normal.
I have interviewed with many professionals, including my urologist of the last 10 years at Fairview-Southdale, 3 physicians at Mayo, and 3 also at Univ. of MN Hospitals. All opinions are approximately the same, I have two options based on my aggressive nature of the cancer, my extremely high PSA count of 35 that doubled in less than a year, my cancer stage (Tc1), age, and my overall good health and condition. Either a radical prostatectomy along with an extensive lymphadenectomy, or hormone treatments with shots and pills for 4 months, then external radiation for 8 weeks every day, also followed by more radiation of various kind (decided later) for 1-2 years more. I am treated as a "high risk" situation because of the dangerously high PSA readings. They cannot find (so far) an metastasizing.
I have read two 500+ page books, belong to 3 support groups, and talked to many survivors, so I am doing my homework. I feel I could teach a class now! LOL.
I have decided (unless someone talks me out of it in the next two weeks), to go for the surgery. I have also decided to have it done "robotically" by Mayo Clinic in Rochester, MN on January 12. (This is the soonest that they can schedule me it for it)
I am also practicing Chinese Qigong, and have been going to an International healer, Master Chunyi Lin. This will help me to recover faster and with less side affects, and also to help prepare for my surgery.
I am told the surgery will take about 6 hours. I will be in the hospital for only 3-4 nights, possibly even out as soon as 2 nights. I will have a catheter in for another 10 days or so at home, and will take about 6 weeks more to recover and heal with little activity.
Frank Xiong, my partner, will be with me at the hospital before, during, and after my surgery there at Mayo. I also have a good friend who works at Mayo that will be checking on me.
I am still planning to go to Mexico on vacation (to rest) but will delay my plans until later, toward the end of February.
Thanks to so many of you that have shown concern. I appreciate that so much. I will be enjoying the Holiday Season with anticipation to tackle this condition on Jan 12 and be cured.
IF ANY OF YOU HAVE CONTACTS THAT WOULD BE WILLING TO SHARE THEIR EXPERIENCES IN THIS AREA OF PROSTATE CANCER, I WOULD WELCOME THE CHANCE TO TALK TO THEM BY PHONE. JUST LET ME KNOW.
Have a super Holiday Season and a wonderful New Year in 2015!
Jan 7, 2015
Time is near. I will go into prostate cancer surgery for a radical prostatectomy and extensive pelvis lymphadenectomy on this coming Monday morning, Jan 12. I am a high risk and in an advanced stage of cancer. I will be treated at Mayo Clinic, Dr. Frank is the surgeon, he is their best for this kind of thing. The hospital is Methodist Hospital of Rochester, MN, one of the Mayo chain in downtown Rochester. I chose to do robotic laparoscopy. This surgery has the advantage of less blood loss, faster recovery time, and usually less lasting side affects that can be devastating. The side affects are still a possibility of course, but less than with an open surgery.
The surgery will take approximately 6 hours. The doctors say that because of my otherwise good health, there is a 50% chance that I may only be overnight at the hospital only one night. If not going home on Tuesday night, then almost for sure on Wednesday night. A catheter will have to be worn 24 hours a day for 7-9 days unless complications.
Final pathology reports on the findings of the stage of the cancer (by examining the removed prostate and lymph nodes) will be available to me as of the Friday after surgery. I am hoping to the best outcome and cure, but of course, there is no guarantee.
Frank (my partner) will take me to Mayo on Sunday night, then will also be there for the entire day on Monday. He will also pick me up when I need to be discharged either on Tuesday night of Wednesday night. I am well taken care of.
The recuperating process takes approximately 6 weeks. The only exercise I am supposed to have is walking, only after the first week. I cannot lift over 10 lbs until the end of February. I will be practicing Qigong also at home during this time to help with the healing process. I plan to join with Frank to my annual Mexico destination, Puerto Vallarta, on Feb 23.
I feel confident that all my research and deliberation on this for the last 2 months + has helped me make a correct decision on how to handle this unfortunate, life-threatening situation. I look forward to the process and anxious for all this to be behind me and go on with my life.
Thanks to all of you for your support, prayers, and guidance through this difficult time.
When I am able to function on a computer again, perhaps about Jan 20, I will send (hopefully) a final note.
Happy New Year and keep the faith.
Jan 15, 2015
Dear family and friends,
This is a follow up from my last email to you on January 8.
I am overwhelmed with the concern and love that I have been receiving from you. The positive energy, prayers, and upbeat comments have been amazing.
My surgery was at Mayo Clinic in Rochester, MN on last Monday, Jan 12. I had a radical robotic prostatectomy and extensive pelvis lymphadenectomy for advanced, high risk prostate cancer. The surgery took 6 hours, and recovery was another 3 hours. (A scare was at two hours in recovery, when I stopped breathing I am told, for about 15 seconds. They kept me under surveillance for an extra hour because of this, but then all OK). The surgeon, Dr. Igor Frank, one of Mayo's best for this operation, said that it went as well as could be expected. No complications during surgery, some blood loss but no transfusion needed, and he was able to preserve both of my main nerve bundles that are critical for better quality of life in the future.
I am now at home recovering in Minneapolis. Frank (my partner, not the Dr., also named Dr. Frank!) has been taking excellent care of me, better than at the hospital! I am so lucky and feel so blessed. Pathology reports on the prostate removed and the lymph nodes to determine what is needed next for treatment will not be available until next Monday. I will return to Mayo at that time to have my catheter removed, go thru some other tests, and go over those pathology reports. I am hoping for the best news, notifying that they have gotten all the cancer before it has metastasized. A bone scan before surgery showed no concerns that this time. No guarantees, but the surgeon said that so far that it looked positive. This is a cancer that can be cured, that is goal of course.
Pain is awful still, 6 incisions all across my abdomen, and I am using lots of drugs. The catheter will be in for a week minimum, (I hope it comes out this coming Monday) it is also quite uncomfortable. This is one week out of my life that I will endure and will be ecstatically happy when it is over. The recovery time is slow, about 6 weeks before I can do much activity, and 3 months before any kind of athletic encounters. I am hoping that I will be able to start training for the annual Red Ribbon Ride that I do each year in the late spring. I also plan to go on my annual Puerto Vallarta vacation (22nd time) on Feb 23. I will not be able to lift anything over 10 lbs, but it will be warm, beautiful and relaxing. Frank will be with me to help. I have many friends there as well.
I cannot express more my appreciation and gratitude for the prayers, positive concerns, and love that you have given me to help me through this challenging process over the last 3 months. What a great feeling you have all given me. THANKS from the bottom of my heart.
I am assuming that I will send a quick note with very positive findings in the pathology reports early next week. Life is short here on earth, enjoy it to the max with the people in your life that matter to you most.
JAN 21, 2015
This is a follow up from my last email of Jan 15 after my cancer surgery…to family and friends who wanted to be on this list...
This is probably going to be my last follow-up mass email unless anything unusual happens with my recovery over the next three months. I appreciate ALL OF YOU! I have received so many loving, encouraging, positive notes. I am bursting with respectful admiration and acknowledgement.
As you know, I was diagnosed with advanced prostate cancer on Nov 6, 2014 at Mayo Clinic in Rochester, MN, after a third difficult "end-fire" biopsy. I then took two months deliberating, getting professional opinions, reading, learning, and decision making leading up to a Jan 12 radical prostatectomy and extended lymphadenectomy.
During my 6 hour surgery on Jan 12 an indwelling catheter was surgical implanted into my bladder thru my urethra. (OUCH! Thick tube connected thru private parts!) This catheter was removed successfully on Jan 19th…what a relief! :-) I am still in pain, however it is getting a little better each day. I am taking a variety of drugs to help with pain, bowels, and blood clotting.
The removed prostate with surrounding tissue along with the removed lymph nodes from my pelvic region were then sent to pathology for analysis. Before surgery (clinically) I was considered an advanced, high risk case of cancer because of my extremely high PSA (test from my blood) of 35.0 that had been doubling every couple of years for the last 10. (Normal PSA for my age should be under 2.). Clinically my Gleason score (aggressive score) was a 3+4 (7) and my stage was considered a T1c.
AFTER pathology, my diagnosis has changed. My cancer was found to be more advanced than they had originally thought. My Gleason score was kept the same (intermediate-to-high risk), but my stage was upgraded to a T3a. This means that there were two areas where the cancer had spread beyond the capsule of the prostate into the tissue around it. There is no way now for Mayo to know if they got all the cancer because of this finding. :-(
OVERALL, THERE IS GOOD NEWS HOWEVER! Chances are positive no further metastasizing has occurred however only time will tell. ALL my lymph nodes indicated NO CANCER so that is REALLY GOOD NEWS. The metastasizing could be spread easily to other parts of the body thru the lymph nodes if there had been a positive reading.
No further treatments are recommended by Mayo at this time. Every three months my blood PSA will be checked again and if there is any change then a decision will be made at that time. I am told there is a 40% chance (based on all my stats and pathology reports) that I will need some kind of radiation therapy within three years. If eventually needed, Mayo is telling me that this is now a controllable situation and that it would be curable. I am told that my decision to go thru radical surgery as soon as possible was the correct move, the pathology results posted confirmed that. It will take 6 weeks for minor recovery, 3 months for total recovery.
I am still planning to relax at one of my favorite places, Puerto Vallarta, MX, in 6 weeks on Feb 23. Frank will be with me to help.
I FEEL GREAT. I FEEL LOVED. I FEEL LUCKY TO HAVE YOU ALL THERE BESIDE ME. My recovery is going well, and I attribute that success to all the LOVE that I have accepted from family and friends. I am overwhelmed with these gifts of love you have given me.
Besides the Western medicine that I have taken advantage of at Mayo Clinic, I also have been practicing "Qigong" and have been going to a qigong healer locally. I have additionally read some excellent books. The one I have just finished is excellent for anyone who is facing cancer and I strongly recommend it if faced with that challenge. It is "Radical Remission" by Dr. Kelly Turner. (2014) Pass on this if you know someone who may need.
I also have put together a comprehensive dialog of all my history and events thru this challenge (I copied/pasted the last 7 emails since my diagnosis onto one document), hoping this might be useful for someone on this email list or anyone you might know who has questions about their own health as it relates to the prostate. I would be pleased if any of you would like that document, it is easy to forward to you, and perhaps it can be of some benefit.
Thrilled to be alive and on the mend! Thanks for everything! REMEMBER, life is short here on earth, enjoy it to the max with the people in your life that matter to you most. LOVE HEALS.
All my love,
You are receiving this because you are family or friends that had requested to keep informed with my progress. Please let me know if you want to be removed from this list, will not be a problem at all. I do not expect another email for at least 3 months, perhaps much longer. Thank you! I am very appreciative of your contact.
I had my second check up at Mayo Clinic since my radical prostatectomy and extensive lymphadenectomy as per my advanced prostate cancer yesterday, April 27.
I am very happy to report GREAT NEWS! The blood tests showed NO detectable PSA count, which means that as of now, there is no cancer spread. Therefore no future treatments have been prescribed at this time, and the next check up will be in 3 months. (A blood test will be done every 3 months for the first 2 years in my case, then every 6 months for another 3 years.) The longer I can go with undetectable PSA, the better the condition is. After 5 years of no occurrence, then they say the cancer is in remission. :-)
My condition is good! I am back to about 75% of normal physical activities. There are still some recoveries needed, but the surgeon feels that it is a good possibility I will be completely back to normal after another 3 months. This was a serious operation and so it takes a few months for the old body to recover. Luckily, my physical condition was pretty decent when I went in for the surgery. That helped critically.
I want to again thank all of you for your generous sharing of love during this difficult period for me. Emails, errands, flowers, visits, gifts, food, phone calls, cards…so much caring in so many ways! It means a great deal to me, I am eternally grateful to you for your sharing of love.
This is probably the last email I will send out regarding this challenging phase in my life. I am also grateful to report that! :-)
I have put together the series of emails that took me from the pre-cancer diagnosis, symptoms, decision process, the doctors and hospitals, research done, pre and post surgery, and recovery, all in one document. If any of you know of someone going thru a similar challenge, please do not hesitate to let me know and I will send you that document that might help you to help others.
612 702 5554
Had my PSA 6 month test done at my local urologist. Still UNDETECTABLE so home free for another 3 months! Some urinary leakage, especially after having even small amounts of alcohol or when tired. Sexually not that great, but feel getting better as time goes on, just very slow. Viagra and Cialis help a lot, and still use a vacuum pump once per week to keep circulation moving in that direction.
Happy Holidays to you all!
You are getting this as a friend or family member because you had indicated that you wanted to be kept informed of my latest health status. If you want off this list, do not hesitate to let me know, no problem.
It has been 13 months since I was diagnosed with advanced prostate cancer and 11 months since my radical robotic prostatectomy and extensive lymphadenecotmy. I have recovered well! Thanks for all your prayers, support, and positive caring thru this tough challenge in life!
60 days ago at my 9 month blood check, after ZERO PSA readings thru this period, my PSA once again appeared in blood. A low reading at .05, but nonetheless a positive reading. Without my prostate present anymore, there should be no PSA, so therefore there is cancer still present in some form. :-( Dr's are assuming it is in the same local prostate cavity area, based on history of others, but no one knows for sure. I had another PSA check 1 month ago, again bad news as it escalated to 0.12.
Confusion exists with what to do now and when. External Radiation seems to be the preferred treatment. That would be daily visits for 8 weeks. There are side affects. I receive different professional advice as my local urologist says to get radiation immediately, but Mayo (they did the surgery) say they want to wait and see until February to see how fast the PSA continues to escalate. I have decided to follow Mayo's advice. I will go on my Southern India tour (postponed from the surgery time last year) in January and then go to Mayo again on Feb 9. I still plan to go to Puerto Vallarta Feb 15 to March 11. (Frank will join me Feb 23 to March 2)
I just had another PSA test done yesterday, more confusion as it went down from the .12 to .07. (These are really low numbers btw. If you still have a prostate you might be 1.0 to 3.0 or even a little higher.) With no prostate, it should be 0.0, but I like that it went down. Possible radiation after Mexico in March.
Best wishes for a wonderful Holiday for you and yours. I intend to be in great health for 2016, and will start if off with a couple of great trips in the spring. Frank has been amazing for me thru all this. THANKS AGAIN FOR ALL YOUR SUPPORT AND GENUINE FRIENDSHIP!
It has been 17 months since I was diagnosed with advanced prostate cancer and 15 months since my radical robotic prostatectomy (prostate completely removed) and extensive lymphadenecotmy (18 lymph nodes in my pelvis also removed). I had recovered well from that challenging time of many months! Thanks for all your prayers, support, and positive caring thru this tough period in my life!
My last update to you was on December 22, 2015. 5 months ago at my 9-month blood check, after ZERO PSA readings thru the first period, my PSA once again appeared in my blood. This means there is some cancer present. I had positive margin (cancer that escaped thru the prostate wall) in two places as confirmed with pathology after the surgery.
The last two days I have spent at Mayo Clinic at their encouragement. I went thru bone scans, blood tests, and two MRI's. The good news is that there appears to be no cancer in my bones at present (this is a likely place for cancer to metastasize from prostate cancer), and also the MRI showed nothing unusual.
The unfortunate news is that I still have an escalating PSA in my blood which indicates cancer still present. It has been recommended that I get radiation treatments daily for 8 weeks. Also this becomes more effective if I undergo Lupron hormone injections simultaneously (to remove the testosterone in my body as prostate cancer feeds on testosterone). This is a difficult situation. To go " daily" means I need to either relocate for 2 months to Rochester or trust the competency of a local hospital to do the radiation so that it is easier and less time consuming. I am considering all avenues at this point, but if any of you have comments I certainly encourage them. I need to make a decision fairly quickly on this. Choosing the right experienced radiation oncologist for this is extremely important, especially considering the location of the prostate wall surrounded by many other key organs and tissues that can be affected.
Side effects are not pleasant. Mood swings, extreme fatigue, hot flashes, irritable bowel/urinary tracks, weight gain, muscle tone loss, incontinence, decreased libido ... just some of the upcoming possibilities.
Please do not be offended if I seem to be "different" to you. I am trying my best and no matter what, I appreciate you greatly as a friend. This has been a severe financial drain also. My insurance was discontinued recently and the new policy has been crazy expensive.
Thanks for reading this and most importantly for your friendship and concern. It helps to remain positive when I have such precious support as you all give me. Please give your loved ones a special hug. You never know when something can happen that can be life-changing. Enjoy every minute with those that are important to you.
Much love and Happy Easter!
Don's e-mail address is: firstname.lastname@example.org