I live in South Texas with my best friend and wife of almost 46 years. I have three adult children who are the finest people I know. I have four grandchildren who light up my life. We have two really big dogs - one of which is a trained therapy dog - she has performed admirably for me (and I have needed it) and so has her little sister who is learning how to be a therapy dog.
My story begins with my PCP (primary care physician) who advised me to take Saw Palmetto for urinary problems - which I did for a number of years. Had I known then what I know now, I would have insisted on more attention. While he had done DREs (Digital Rectal Examinations), they were not annual, even though PSAs were done on an annual basis. I did manage to obtain and keep a lab report from April 1997, which showed a PSA of 1.2. I did keep some other lab reports after that but none of them showed PSA. I have the "general" impression that a PSA test was taken annually and that my PCP assured me everything was ok. It would have been good if I had learned to be more proactive (and keep copies of everything) about my own health care earlier - but I only learned to do that recently. As it would turn out, I would need to exercise this skill repeatedly!
In 2006, my PCP left private practice. In August of that year I chose to visit the PCP who had taken over the practice. He wanted to do a round of Blood Work and I requested that he include PSA. He might have done that anyway - I just don't know. When I went in for follow up, I asked to see a copy of the lab report. It showed a PSA of 6.0. I had to push the issue of it being out of range with the Dr. and ask what should be done. He scheduled a Colonoscopy (I had never had one) and Prostate Exam - he didn't seem to want to do a DRE in his office! I had asked him about that and he said he would take care of it during the Colonoscopy! Sometimes I feel like I am pushing on a string - but I am trying to be patient! I scheduled the Colonoscopy for October 18, 2006 - we had already scheduled a road trip to Santa Fe and wanted to enjoy it before jumping into the tests. The Dr did not seem particularly concerned about a PSA of 6. On October 25, 2006, at a follow up appointment, we learned that the results of the Colonoscopy were negative and the prostate was hard. The Dr referred me to a Urologist. Now I am starting to get worried (just a little)!
My PCP at the same time referred me to an Endocrinologist for swelling in the neck. This Dr wanted a thyroid biopsy. So now I am thinking that maybe I have thyroid cancer or prostate cancer and my stress level is rising. The results were negative - - - one down and one to go!
My first appointments with the Endocrinologist and Urologist were both on the same day - November 29, 2006. It seems like it is impossible to schedule and appointment for less than a month! More waiting! More time to get more stressed out!
My Urologist told me that a PSA of 6 was not so alarming. He advised treating first for a low-grade prostate infection and he gave me a sulfa drug to take for about 4 or 5 weeks. My next appointment was scheduled for January 16, 2007. His reassurances helped me relax a little!
The January 16, 2007 appointment with my Urologist started out routinely. He gave me a PSA test, which they are set up to do in the office and produce immediate results. He informed me that my PSA was now 10.0 and that he was fairly certain that I had prostate cancer. He recommended a biopsy, which was scheduled for my birthday (!), January 30, 2007. Now I am starting to panic and my wife is, too. We start doing some research and thinking and crying! I can't get it out of my mind. The biopsy sounds scary and unpleasant and painful and embarrassing. I'm not that modest anyway, but……….!
My 66th birthday is welcomed by a Prostate Biopsy! Oh, Great! I can go into detail for anyone interested, but for now I will say that it was a bit uncomfortable and a quick jab of pain every time he pulled the "trigger" to collect another core (10 cores). Overall, however, the pain was much less than I expected. My wife drove me home and I was a bit tired.
In the late evening of February 1, 2007 the Doctor called and said the biopsy showed cancer. He would fax me the report and set up a CT Scan and Bone Scan. The biopsy report shows Right Lobe - Gleason 4+3, involving 7% of Biopsy, 3 cores positive/ Left Lobe - Gleason 4+3, involving 40% of Biopsy, 3 cores positive. Now the stress and worry move into high gear!!!
On February 7, 2007 I go in for the scans. The Bone Scan created anxiety, because after a while, the technician picked up the phone and requested authorization to do a more detailed and focused study. I could see what he was looking at on the monitor - a mass of white area in the lower back and pelvis area and that is where he focused the scans for the rest of the time. I knew I had bone cancer! I know that I think too much and analyze too much and explore all the various bad news options too much - but I can't help it! I think that I have always expected the worst and hoped for the best. I am told to set up an appointment with my Doctor to go over the results.
I call the Doctor's office right away and ask for the appointment. The little girl on the phone says she can get me in on February 26, 2007. That is almost three weeks!! I'll go crazy by then!! I am proud of myself for holding my voice down and telling her that the date would be acceptable as long as she had the Doctor send me a letter stating that a delay of that magnitude will have absolutely no effect on the eventual outcome of my case! She immediately put me in touch with the Doctor's nurse who scheduled my appointment for February 9, the day after tomorrow! My wife and I share lots of tears and fear………
On February 9, 2007 the Doctor greets us with "Good News - the Cancer is contained". My wife is relieved but I am not. Both scans were negative and it turns out that the white areas I noticed on the monitor were arthritis! All that worry for nothing! The Doctor goes on to say that this cancer is very angry and aggressive and says we should get treatment right away. He says my two main options are radiation or surgery. We talk for quite a while and since I am predisposed to surgery, I tell him I'll take that option. I did not want to wait or think - I just wanted to get it done now! He does not offer to perform the surgery himself, but suggests a Doctor who has a long history doing prostatectomy procedures including with Da Vinci. He thinks that I will qualify for Da Vinci. This Surgeon is in a major medical area 4 hours from our home.
They check the Surgeon's schedule and find that he is on a two-week speaking engagement, so it will be about a month before I can see him. They give me a choice of seeing his associate, instead. I chose to wait a month - I want the best with the most experience. At this point, I am fairly well unnerved!! My appointment is set for March 6, 2007.
I have called the Surgeon's office to confirm my surgery date. It turns out that March 6 is an appointment with the Surgeon - not a surgical appointment! How stupid of me not to realize I would have to see him first!! I am so anxious that I am not even thinking straight! I have to push (I'm getting used to pushing!) to ask for a date to be scheduled for surgery. At least I'll have an appointment even if we change our minds. I won't get put off several more weeks! So now my surgery date is set for March 12, 2007.
I start studying my surgeon's website and it is beginning to look like the results of my biopsy are placing me on the borderline as to whether I will qualify for the Da Vinci robotic surgery. This is going to be a tough and emotional month! My Surgeon sends lots of papers for me to fill out. I have to get my pathology reports and slides sent to him and I have to get the films from my scans to take with me.
Most of my nights are now fitful sleep at its best. I am having a lot of pain in my back and hips and, of course, I am convinced it is bone cancer anyway - in spite of the negative scans. I think stress helps bring the pain.
We leave for Houston on Monday morning, March 5, 2007. We stop for lunch at Hinzes Bar-B-Que, one of our favorite places. At last we are doing something to get us on the way to fighting this bastard!
We check in our room, laze around and go eat some steaks for dinner - almost like a vacation! Then every so often, reality hits and we start to cry.
March 6, 2007. Our appointment with the Surgeon takes most of the day, which includes tests and waiting and meeting. He explains that my Gleason is really 8 and PSA is now 12.4. He tells us this is high-grade cancer and that Da Vinci doesn't reach as far as he will need to go - so I don't qualify! I decided to go with his recommendation of an open radical prostatectomy. I just want to get this cancer out of my body!
On March 10, we met my kids and grandkids (the ones who live nearby) at Red Lobster. I kind of thought it felt like a "last meal" but it was wonderful to be with family. That evening, two grandkids became ill with a raging stomach virus.
My daughter is scheduled to meet us in Houston so she can sit with her mom through the waiting.
March 12, 2007. It falls on my daughter to get me to surgery and do all the waiting. My wife is stuck in the hotel room with a bad stomach virus. She is ordered not to come near me. The surgery runs some 3 ½ to 4 hours with another 3 hours in recovery. (PSA is now 13.1). My daughter spends the first night with me - helping me get up to go to the bathroom every hour. I was in leg pumps and they had to be loosened so I could get out of bed. By now, I have bad diarrhea from a stomach virus - and it ends up contributing to a more lengthy stay in the hospital than we expected. I had lots of pain, but a Morphine Pump helped a lot. I was walking the next day! I do not remember a lot of what went on in the hospital. I do remember a Chaplain showing up at my room and me throwing him out with a severe scolding. If he had been willing to listen to me, I might have let him stay! I'm not at all against Chaplains - - I just can't stand idiots!! I told him (maybe it was my wife who told him - I don't think I was lucid enough) to get the books Good Grief by Granger Westberg and Don't Sing Songs to a Heavy Heart by Kenneth Hauk. She told him not to visit another patient until he had read those books!!
The PA for the Surgeon told us that there was a lot of cancer, that it was very large and that they did a lot of bladder work, but that they had good clean margins. He is certain that my first PSA post surgery will come in around 0.1 or 0.2 or greater. I asked him if my memory was correct that the Surgeon had said that if there was more than one lymph node positive, then the prognosis would be very poor - with likely failure in three years or less. He said that is correct. That is my worry! We cried a lot and were very apprehensive, but mainly I just wanted to try to get through the pain and begin to eat a little something. Nothing tasted good!
I was dismissed on March 17, a Saturday. We stayed in Houston the next day. I continued to walk the halls of the hotel trying to gain strength. I had tried to think ahead and brought a cane with me in case I needed it. I did need it! It helped steady me when walking, but mainly it helped me get on my feet from a sitting position. I was to keep using it for the next 4 to 6 weeks because of the abdominal soreness. On Monday the 19th, we were up at 3:30 am and went walking. I finally had a bowel movement that morning - thanks to the walking and the stool softeners! Later in the morning, I had a contrast x-ray of the bladder, which came out ok, and I was told to have my Urologist remove the catheter on Thursday. We headed for home the next day - every little bump on the road hurt on what was now almost a 5-hour trip! They had given me a leg bag for urine collection in the hospital and taught me how to use it - so I wore it home in the car with some loose sweat pants. The catheter is not comfortable! The post-operative visit is scheduled for April 24th.
Up to this point I have been writing from journal entries we made throughout our experience. A friend who had been through breast cancer treatments told us that, if we did anything at all, we must keep a journal. This was probably some of the best advice we received! Once we got home, our journal entries ceased for a while. We were just too exhausted to write! So now I am writing from memory and reconstructing events from billing records.
At home I tried to sleep as best as I could and I tried to keep walking. Did I say that this catheter is not comfortable? I can hardly wait to get it out. My therapy dogs stay with me all the time! My wife and my family have been wonderful support - - but - - I don't want to see anyone else! I don't want to hear another story about Uncle Albert's Prostate!!! I know people are trying to make me feel better, but they just make me mad!!! We cry a lot!!!
March 22, 2007. I see my Urologist today for catheter removal. He won't do it! I told him that my Surgeon said it is ok to remove it today, but he refuses and wants me to have another contrast x-ray of the bladder - which I do. He still refuses and tells me that I am not ready. The next day I am on the phone with my Surgeon's Nurse to see what can be done about my Urologist's intransigence. She promises me that they will call and straighten it out. By late in the day they are able to persuade him to remove the catheter and I am told I can come in on Monday. The bottom line is that I have to go through the weekend with this damn catheter! I am getting tired of having to run interference and push all the time!
Monday, March 26, 2007. I'll get my catheter out today! (I hope) I am still wearing my leg bag and loose fitting sweat pants. I brought pads because they told me I would need them. A very pretty, young girl finally calls me back to a room. O Great! I thought that I had lost all my modesty at the hospital but having to take off my pants and have her remove the catheter tells me that I still have a little more modesty to loose! And the surgery has left me smaller than I used to be. I'm embarrassed! I won't go into details, but I can, if asked. I had expected some pain but there really wasn't any pain - just some discomfort. At last - it's out! I do need the pads. I must have gone through 3 or 4 large packages of them over the following month or more! (10-12 a day!).
My night bladder control improves over the month and so does daytime control, but it's improvement is slower. I am trying to learn to like food again and keep moving as I can - I still have pain, but it is gradually getting better. I wish that I could say the same for my anxiety level. We are supposed to get surgical and pathology reports at the post-op appointment. I am starting to feel a bit depressed.
April 24, 2007. Our journaling begins again and we are headed for our post-op appointment. We have lab work on arrival and find out the PSA results tomorrow. The pathology report comes back worse than expected: Adenocarcinoma, Grade G3-4, pT3aN1MX, Size 2.5cm, free margins, Stage IV, Focal established extra-capsular invasion, Nerve invasion, 4 Lymph Nodes Positive. Gleason 9(5+4). We are in shock! My Doctor says the best alternative, if my PSA comes back less than 0.1, is to enroll in a Clinical Trial. The trial is testing the simultaneous administration of Eligard and Taxotere. It has 3 arms: one starts the simultaneous administration immediately, another starts simultaneous administration when PSA rises to 0.1 and the third arm is the standard of care which is to initiate the administration of Eligard when PSA rises. I decide to go on the trial. I have to be enrolled no later than 3 months after my surgery. We start the paperwork. The enrollment process is supposed to take about a week. We learn that my PSA reads 0.005! Amazing! Unexpected! The Doctors are surprised and we are encouraged but still worry. At least this means I am qualified to apply for enrollment in the Trial. My Doctors did not expect me to have a PSA low enough to qualify!
We are back at home and still on the roller coaster between thankfulness for life and fear of the unknown. I am starting to feel better and we start planning a short RV trip to the Hill Country for about 6 weeks from now. As we move into the middle of May, I am getting frustrated with how long it is taking to get me signed up for the Clinical Trial. I am being proactive about it and making numerous calls and sending numerous E-mails to my Surgeon's Staff People who are responsible for getting it done. They seem to be having trouble obtaining my pathology slides from the hospital.
I have been taking Viagra, which helps a little but not enough. It gives me vision problems (everything looks very bright) and diarrhea. I had a sural nerve graft during the surgery. I guess it takes a long time for the nerves to grow. I am not discouraged yet.
We are starting to prepare for our trip. It is good to have something else to occupy my mind. I am pressing my Surgeon's Staff about the Clinical Trial delays. The issue is still that they are having trouble getting my pathology slides from the hospital so they can send them to Johns Hopkins. I find out that they cannot even get the person responsible for releasing them to return their calls. I ask for the PA or the Doctor to make an attempt. This is frustrating! I am seeing getting on this Trial as being a matter of life or death - or at least how long I will live. Logically I know that this is not the case, but emotionally I am zeroing in on that view and beginning to feel panicky.
June is here and we are on our way to the Texas Hill Country. There are less than 2 weeks before the deadline for me to be enrolled in the Clinical Trial.
It is June 5, 2007 - our 44th wedding anniversary. It is an emotional time. We are thankful for 44 years and apprehensive about what the next year will bring. I have been trying to phone an acquaintance who sits on the Board of Directors of a major hospital in the United States. I want to get his advice on what I should do about this Clinical Trial mess. I don't want to take inappropriate action or do anything, which would jeopardize my future health care, but I am feeling that I need to take matters into my own hands. We are on our way for an anniversary dinner when my acquaintance returns my call - so I pull over to talk. I want to know if he thinks it would be acceptable for me to call the Administrator of the Pathology Department of the Hospital. He advises that I should make the call. We cry. Then we go celebrate!
June 6, 2007. I call the Administrator of the Pathology Department and I am referred to the Doctor in charge of it all. I explain what is happening to the Doctor and that my fear is that my slides and tissue samples have been lost!! She assures me that nothing is lost and that she will look into it. This afternoon she calls me back and tells me they have my slides and paperwork and that they will resection this afternoon and overnight everything to Johns Hopkins. WOW!!! But I still have to fight for everything and I am tired of doing that! I didn't know that fighting cancer included fighting the medical care delivery system!
June 7, 2007. The slides were not sent, but my Surgeon has them. I remind his staff person that he wanted me in the Trial ASAP! Everything will be sent tomorrow! (It actually happened)! They are requesting an extension of the deadline for me. In the afternoon, I received a call from the lady who held up my slides. It is an apology! She tells me that she has been formally reprimanded. She should have been fired! It is a long conversation - I am demanding to know why and does she understand that this is my life she is fooling around with??? By the end of the conversation, I am yelling. I feel better - and I feel embarrassed that I lost my cool. Now the wait begins to find out the result of the randomization process. I believe my Doctor wants me in the immediate treatment group. They tell me that I should know in about a week.
We are back from our trip to the Hill Country. I am tired from the trip, but I did ok! Maybe there can be life after RP! I have a letter waiting for me from my Surgeon. He is leaving the Urology group with whom he was associated and forming his own institute. He will also be working with a different hospital, it appears(!). It looks like his ability to provide service and do research will be enhanced. I signed the authorization for my records to be transferred to him on June 14, 2007. I am convinced that I am working with a highly skilled Surgeon and medical strategist and I want to stay with him. As a medical school professor, I believe that he is in a position to stay abreast of the latest research and development.
June 25, 2007. I finally heard from the Clinical Trial. I have been randomized to the delayed treatment group, but I will still receive simultaneous administration of Eligard and Taxotere when treatment starts. I am somewhat disappointed - I had mentally prepared for immediate treatment. I was convinced that, with this aggressive Stage IV cancer, hitting it really hard right away was what I needed to do. I'll be spending the coming months trying to get more comfortable with the delayed treatment idea. This is one whale of a roller coaster we are on! I am due for my next PSA in a month. I fully expect it to be elevated. I'm getting nervous about it already!
We have decided to take a longer RV trip! We plan to be gone about a month. We will take our time - I don't know how I will hold up. I still tire easily. We are going to go up through Colorado with our ultimate destination being Yellowstone and Grand Teton National Parks. I am saying to myself that this could be my last chance to do something like this for quite a while! We will leave in early August. This will give me time to get ready and to be sure there is time to get the results of my next PSA test.
July 25, 2007. My PSA is less than 0.003!!! What a relief!! We are going to hit the road!!
We have had a great trip! The Grand Tetons were our favorite. Most of the worries were left behind, although they would appear from time to time. I think the trip was special because I am only 5 months out of surgery and because we were well aware there may not be another one. The trip was my way of saying that I am not going to let this bastard control my life! It was another way of fighting back.
We are falling into a PSA routine: going about life with thankfulness, punctuated by increasing stress and anxiety in the month before the next PSA test. My tests are coming back with an amazing degree of good news - yet I keep expecting the next one to carry bad news!
October 25,2007: 0.007
January 21, 2008: 0.004
April 22, 2008: less than 0.003
My Doctor says I can go to every 6-month tests! I tell him that I have PSA anxiety and ask to stay with every 3 months and he agrees.
My Pastor says my low PSA readings are because of prayer. I have a hard time with that - sounds too much like an Aboriginal Rain Dance! The Prayer of the Rain Dance is answered by the rain and the Prayer for low PSA readings is answered by - low PSA readings. But what happens when it doesn't rain? What happens when my PSA rises? What about these Prayers then? My faith is challenged enough as it is……I guess I am going to have to do some theological work and try to sort some of this out. I start studying and writing a paper on Prayer to sort out my faith and my Theology. It is certainly not turning out to be the traditional viewpoint, but I can document my argument with the Traditional Theologians! I'll send the paper to anyone interested!!! Let me know.
We start planning a trip to the Smoky Mountains. We need to get away from all this and put it behind us for a while. There is a Family Reunion in the area I want to attend - relatives I have never met. We want to leave around the end of May and plan to be gone about 3 weeks.
At the end of April, I receive word that the Trial has been closed! I think it was closed because my Surgeon is no longer associated with the old group. Now it seems like I have to do my thinking all over again - I am really disoriented. Nobody seems to want to tell me why. After contacting numerous individuals I find that it appears the trial was only closed at my Surgeon's office. My stress and anxiety are in high gear again! I do not want to abandon my Surgeon, but I have been so convinced that being in the Trial was the right thing to do, I don't want to leave it behind either. I feel like a kid whose parents have divorced! I do 2 things: I start trying to contact the Trial Sponsor to see if there is some way I can stay in the trial; I set up an appointment with a local Oncologist for help in gaining some perspective on what is happening.
May 9, 2008. My Surgeon notifies me that the Trial is, in fact, closed to all new enrollees but those who have been previously admitted will be followed. I will have to sign a new consent form - which eventually arrives. The new consent form is because of their relocation to associate with a different institution. I receive an apology for the "anxiety this has no doubt caused you." Once again, I have had to take initiative to fight the system for my care! I do believe that - had I not contacted the Sponsor directly, I would not have been reinstated.
May 17, 2008 (Saturday). I had an episode of a LOT of blood in my urine. I just know it is cancer! Of course it was after office hours and my doctors told me to go to the emergency room. After about 3 or 4 hours and tons of tests, the bleeding seemed to stop as quickly as it started and I was told to go home and call for an appointment to come in and see my Urologist. He was not on call that night and his associate saw me. After major hassles with the office staff all day Monday, I finally was allowed to see the Doctor on Tuesday! I am getting tired of having to fight all the time!! The Doctor tells me that he believes I have a bladder infection. He will treat it and it will be all right to take our trip as planned. He wants to perform a Cystoscopy to make sure everything is clear. This started out with another attack on what little modesty I had left. It goes the same way as my catheter removal: A very pretty, young girl finally calls me back to a room……..you know the rest!
We had an absolutely wonderful trip!! As an only child of an only child of an only child - I didn't know that I had family. I found family!! We celebrated our 45th Wedding Anniversary in the Smoky Mountains over a very nice dinner in a Bed and Breakfast on top of a mountain. It wasn't as traumatic as the previous year's celebration, but there was still an occasional tear. We feel so fortunate to have found each other at such a young age! We are grateful for the gift of life and family. I am determined to treasure that gift for as long as I can.
We are back just in time to start dreading the next PSA test. We start planning for another trip anyway - a trip of almost 5 weeks to Grand Teton National Park! I still see these trips as one way I can fight this cancer and prove that it does not have the upper hand. Maybe someday it will - but not today!
Jul 14, 2008. PSA=0.003. There! Take That! POW! BIFF! BAM!
The Grand Teton trip was great! We love the wildlife. I have some great photos of a Bald Eagle, Grizzly, Moose, Bison, Antelope, Deer and numerous other animals. I hope we can go again in the summer of 2009.
It is the same story to tell about anticipating the next PSA test.
October 21, 2008. PSA=0.005.
The economy worries me. I am scared of a Depression and I am petrified of Hyper Inflation later on down the road. I am trying to watch my spending. My Viagra costs over $1600 a year! That is one of the worse side effects. The others are still with me: my vision is affected with everything appearing very bright after I take it and it still gives me diarrhea. I ask my Doctor if I can quit taking it or if there is something else. He tells me that I can quit, but I will need to use a vacuum pump daily - it will do just as good as the Viagra. I am tired of these side effects of the surgery, even though they have improved significantly. The impotence makes me depressed and the incontinence is an irritation. I visit the bathroom on a regular basis.
I am getting close to the two-year anniversary of my surgery. I find myself starting to obsess over having gone this long without failure while knowing how highly aggressive my cancer is. It doesn't make sense. It is really bugging me and making me depressed when I should be celebrating! How stupid of me!
I have become convinced that the principle reason for my continued good PSA reports is the skill of my Surgeon. He, along with two other Doctors - one of them being my Oncologist, is working on a Clinical Trial (Phase I/II). The Trial is of a vaccine and is "based on pre-clinical studies that demonstrated eradication of established experimental mouse tumors". It is for men with progressive AIPC. There is also a distinct possibility that this vaccine may work for other cancers - which they plan to explore. My Oncologist will be the principal investigator. While I do not qualify for the trial at this point, it is nice to know that this is the caliber of people who form my medical care team.
November 14, 2008. I received a call to tell me that the Clinical Trial I am on is being closed. OK. I'M MAD. The person on the phone suffers! I feel better but I also feel guilty for my explosion. I know that anger is one of the pathways out of depression. I know that anger and guilt are part of grief. At least maybe I am doing some of the grief-work I need to do, but I am still embarrassed by my display. Apparently the Trial closed because it could not accrue an adequate number of participants, but I am not convinced that I just didn't fall through the cracks!
January 22, 2009. PSA less than 0.003!!!
I am now closing in on the two-year anniversary of my surgery. I would make the same decision again!
One of the more liberating thoughts for me about my condition is to realize that there is a difference between being cured and being whole. I have grown to understand that it is possible to be whole without being cured.
My story is not the only story to tell about my cancer. My wife, my daughter, and my two sons each have their own story to tell - - - and maybe someday they will tell their story. It may also happen that my grandchildren will feel empowered to tell their story when it is theirs to tell. Should I be given permission to include these stories in this space, you will see them at that time.
I have decided to tell my story for several reasons:
I believe that I am in danger of developing morbid grief over my loss of health, dealing with the side effects of my treatment, the anticipated battle with future treatments and ultimately, my death.
I believe that telling one's story is a major step in dealing with that grief and with doing grief work.
I believe that telling my story may help someone else and that by helping I may be able to rise above my own emotional pain and be hopeful again.
I would be pleased to hear from you.
I have just received the results of my latest PSA test and it is undetectable at 0.003! It is now just over 25 months since surgery and I still do not understand how I can maintain these kind of results with such advanced PCa except for the skill of my surgeon! I am most grateful to everyone for your support.
My PSA just came back at 0.005! Amazing!
Last week I went into the Lab for a PSA blood draw. I also took orders from my Primary Care Physician for my routine tests - even though I was nervous that 2 sets of orders might confuse the lab. They assured me it was ok and proceeded to select vials for the test. I asked if they had pulled enough vials and the technician assured me that she had. I asked if it was enough for both sets of orders and she looked at the orders again and selected one more vial! After trying to find blood in one arm, she gave up and tried the other and was successful. Two days later my Doctor notifies that there are no results yet. So I call the central office of the lab to inquire and they seem to be convinced that I had not been in this month! I have to accuse them of losing my samples to persuade them to look further - and they finally called the lab where I had the blood drawn. They tell me they will have someone from that lab call me back. They call back and do have the results. I give them phone numbers and people to talk to in the Doctor's office and they finally figure out how to get the reports to the Doctor. They have been drawing my blood for 2 1/2 years at this lab - - - and now can't seem to get the reporting right! I have become convinced that one has to ask questions and push continuously in order for the system to work and then sometimes it doesn't!!! This was not as stressful as it might have been 2 years ago - but it is still unpleasant.
It has now been 32 months since my RP and I am most thankful that my PSA is still undetectable (0.006 this time). I still cannot get away from the feeling that the next PSA will not be so kind. We even recently decided on short notice (maybe this will be my last chance) to go to Italy and had a wonderful time - and I was able to do it and carry enough pads with me - - - it all worked out ok!! It gives me a bit more sense of freedom, but I still cannot escape the awareness that it will probably attack me again!!
My latest PSA came in at 0.006. This is my three year anniversary! My Doctors did not really believe that I would make it this long! Truly amazing! I credit the skill of my surgical team! I had my difficulties with the lab - they lost my report again! This time they told me it was because they had misspelled my name. They claimed that the report wasn't lost - they just couldn't find it! Oh well....I am starting to get used to having to fight to make any progress at all when dealing with the medical bureaucracy.
Best wishes to all in the struggle.
Pete
Latest PSA came in at 0.008. Still looking good, although it has been rising since January 2009. We'll see........
My latest PSA results came in at 0.005! Since my PSA had been slowly rising since January of last year, I was expecting it to be higher this time. Crazy, isn't it that I would be worried at these ultra low levels? I am afraid to think that I might be coming out of the woods, but I am starting to become more hopeful. Perhaps my first step towards lower anxiety might be to lengthen the time between my PSA tests. If anyone has any comments on this, I would be pleased to hear them.
I continue to be amazed that my surgery was this successful and have nothing but high praise for my doctors. I think that they must be surprised also, for it was quite clear that they did not expect these results of a low PSA for this long. Peace be with all who are in this struggle.
Pete.
My PSA test came back at 0.012ng/ml. It has been running between less than 0.003 and 0.008ng/ml. Six months ago it was 0.005ng/ml.
I had gone six months this time between checks which my doctor wanted me to start doing two years ago but I kept on every three months until this time. Now he says he wants me to have another test in six weeks and go back to every three months after that. He says this isn't worrisome. The reason he wants another test in six weeks is that it is his overly cautious side coming out. He says as long as it is less than 0.020ng/ml we are happy. It has now been four years since my surgery without need for follow up treatment (which I think is remarkable for cancer so advanced).
Peace and Hope to all.
Pete.
My latest PSA just came in at 0.009. I'm relieved. Looks like it is continuing to "meander". Maybe the next one will tell me whether it is meandering at a slightly increased level or not. My doctor wants the next one in 3 months.
I have added to the supplements I am taking. They now include: D3, Fish Oil, Melatonin, and Green Tea. It is most amazing that I have gone this long since surgery for such advanced PCa! It makes me wonder if I should be insisting on scans from my Doctors!
Thanks to Terry for this website and best wishes to all in this struggle!
Pete.
PSA is 0.014. My doctor wants another one in 6 weeks. I suppose I will have to quit taking supplements for a while to see if there is PSA movement to find out whether they are having any kind of impact.
I'll see what my next reading is and then decide.
Today I revisited YANA and was pleased to see that story updating has been resumed! I had quit checking in and found that I missed this fine resource.
I have had two PSA tests since I last reported: Both were 0.015. One was Aug 24 and the other was Oct 5. My next is scheduled for early January.
For the last couple of months, I have been struggling with blood pressure issues. One of my medications has been discontinued because my doctor thought it was contributing to low Sodium which he thinks has been causing headaches. However we still have not found the right balance of medications to bring the blood pressure down to reasonable levels. In the meantime headaches continue! At least the dizziness is receding and I am driving again.
I have quit taking supplements for now so as to try to simplify the chemistry.
PSA is 0.01. Next one scheduled for 3 months.
My July PSA was 0.01 and My October PSA just came back at 0.02 - the first time since my surgery it has been at this level. I am to have another PSA in 3 months. My blood pressure medications have now been adjusted to where the blood pressure is under control. However the headaches continue but are improving. I have been taking an anti seizure medicine given to me by a Neurologist to bring them under control. His diagnosis is "NDPH" which stands for "New Daily Persistent Headaches"! Can you believe that? I wonder if it is code for "I don't know what is causing them"? He says they will be gone in a year or two!! Well....Great!!
I am wondering if I am moving into the next phase of this cancer. I count myself fortunate to have gone over 5-1/2 years since surgery with complete remission and no further treatments. With Stage IV cancer, I suppose that is most unusual. I am absolutely convinced that having a gifted surgeon makes the difference! These last years have truly been a special gift! Ultimately, I am aware of their Source! I am constantly thankful for each day.
Dec 2012 PSA = 0.02. Year long headaches are gone!! Misdiagnosis by 2 doctors (an Internist and a Neurologist) and after several scans! Diagnosed and treated my self with a supply of strong antibiotic originally given to me by my surgeon for just such an event: loss of sleep from a severe urinary tract infection. I do not like to self prescribe, but my Internist was out of town with no backup and my Urologist could not see me for 3 weeks!!! I would be in the hospital by then! The main critique is how stupid I was not to figure it out sooner...oh well.
This past month has been a scare about possible throat cancer - seems like I stay paranoid. After CT and MRI - no cancer shows. The reason for the paranoia is wondering when and where my Stage IV, Gleason 9 prostate cancer will show up - I was experiencing excruciating pain on coughing or talking too much(!!) or even talking a little in a normal voice. MRI showed "paralysis/denervation of the left vocal cord". My Otolyrangoloist does not know the cause - possible strain from coughing?? He has started me on a round of steroids and it may be helping.
Well - one day at a time...wishing all the Hope of the Season!
Pete
The throat issue became excruciating pain and inability to swallow - lost 30 lbs. Throat surgery removed a tumor which was benign (!)
PSA March 2013 = 0.008
PSA June 2013 = 0.020
Next PSA scheduled for 3 months.
Found 30 lbs.!
I am still having quarterly Ultra-sensitive PSA tests. While results have varied none have been higher than 0.025. Still no other treatment since my surgery!! I give credit to my surgeon and his team for their work over 7 years ago on what turned out to be Stage IV!!
Continuing to survive Stage IV surgery...8+ years!
PSA spiked to 0.047 and starting EBRT & ADT.
I have now completed 37 Radiation Treatments, 2 quarterly injections of Lupron and one injection of Prolia (for Osteopenia). I am experiencing muscle weakness and finding it difficult to walk. My incontinence is worse - back to where I was just after my surgery. Hot flashes/chills have made their appearance and are disrupting sleep. I have been through a time of severe Urinary Tract Infection necessitating 2 visits to the ER and learning how to self-catheter.
Just passed my 10 year anniversary of my diagnosis! Radiation is finished and have had 4 quarterly injections ADT. Fatigue severe at times.
Celebrating my 11th aniversary of my diagnosis (Gleason 9, Stage IV). One more year on current injections.
About 4 years ago, my PSA was becoming elevated. Went to radiation therapy, then 3 years of ADT which I have just completed. I intend to forgo any additional injections of Trelstar and Prolia until PSA begins elevating again. I am scheduled for an extraction of a severely cracked tooth. My oral surgeon requires a wait of 3 months after my last Prolia Injection to minimize complications from jaw necrosis.
I have been self isolating during COVID-19, so I skipped my quarterly blood draw. I have been feeling better with the suspension of hormone deprevition.
I find it absolutely amazing that I have survived this Long! I attribute my survival to my surgeon and his guidance over the following years!
Continue to check PSA every 6 months. Still undetectable.
I doubt that my arthritis is related to my cancer, but it is attacking!
I am amazed to be alive!
Peace be with you!
