Starting about 3 years prior to diagnosis, I had the following slowly emerging symptoms: Occasional prostate infection, waking up to urinate at night, and very slight discomfort in the prostate region. Since the symptoms grew so slowly, they were easy to ignore, I thought this was a part of aging. It was only in hindsight that they all made sense.
I really shouldn't be all that surprised as my dad had prostate cancer about 6 years ago and my mom has had multiple bouts with cancer as well. Bad genes, I guess.
I had a DRE (Digital Rectal Examination) and PSA test as a part of a regular check-up in June 2011. My DRE showed no enlargement or nodules. The PSA was 3.6 up from 0.6 about 2.5 years before. That's a 6x increase over 2.5 years. My doctor did another test about 4 weeks later and the results were 3.1, only a 5x increase, lower than the previous but still a bit worrisome. So he sent me to a Urologist who did a DRE. Again, no enlargement or nodules. The doc mentioned that based on my numbers, I have a 25% chance of having cancer but since I was young, he would put his money on me not having it. But, he gave me the option of doing or not doing a biopsy to find out more. He called it 'reconnaissance info' that would help. Well, it turned out that it did ...
In August 2011, biopsy results were positive. Even though I had been thinking about those emerging symptoms, the finality of the diagnosis is really tough to take. For those of you who are new to prostate cancer, there are things that are important to do:
1. Try to calm down, in most cases, you have time to learn about your options.
2. Take time to learn all you can about the options.
3. Have your wife/partner help out.
I did #2 and after a while could do a bit of #1.
Here are the details of my diagnosis. Gleason 3+3, 5 of 12 cores with 2 at 30% and 3 at 5% or less, 4 of the positive hits were on the left side. So this isn't the most aggressive cancer, the tumor could not be called small either.
The Urologist did a good job of explaining the my diagnosis and options available to me. He recommended surgery to me but also recommended that I take my time, about 3 to 6 months, and learn about the options. So I went off for a second, third, fourth, fifth and sixth opinion. In addition to learning extra opinions, you also get to hear your own diagnosis again and interview Dr's about their surgical history and their treatment approach.
For me, they all recommended surgery because I am young and otherwise fit, and because I had too many cores positive to be a as good a candidate for active surveillance. Most said that I shouldn't wait because if I waited it was a near certainty that I would have to have some form of treatment and so doing it younger gives better oncological, continence and potency results.
In visiting urologists, I found it took about 2 before I got comfortable hearing the treatment. My wife went with me to all of them and we took lots of notes and took some time to discuss our impressions right afterwards over coffee. This worked really well. 2 of the 6 urologists only did open surgery, 3 did robotic and 1 did laparoscopic. None of the Dr.'s recommended any other scans, as the staging was too early. This happened even though we asked about it. We always had a list of questions to ask. I made this list from lists that I found on the internet but customized to my situation. [The approach Mike describes is summarised on Surviving Prostate Cancer which includes a suggested list of questions.]
It is very valuable to hear each of their takes on why their surgery type is better than the others. In the earlier visits the different stories were hard to process but, in hindsight, it was good because now I am confident in my decision. In addition, I talked with my Urologist, regular doctor and nurse from my insurance to help me process the vast amount of information. In short, I made a lot of people miserable.
The hardest thing to process is the recent changes in recommendations for active surveillance and the recent changes in results for robotic surgery. When you are collecting and digesting this info, keep in mind the trends over time, the ages that the results are relevant for, and the size of each study.
I have chosen to go with robotic surgery with Dr. Tuerk because of the recommendation from the initial Urologist, my primary care Dr., my own research and instincts. My surgery is scheduled for Dec. 19th., 4.5 months after diagnosis.
I had lots of good news since the operation.
Here are my entries over the last few weeks.
I found that one of the hardest things about the initial diagnosis is selecting a doctor. My regular doctor referred me to Dr Lamont who did the biopsy and advised me that open and laparoscopic/robotic gave the same oncological, continence and potency results. My cousin, who is a nurse, referred me to Dr. Ritchie. I found out that he only does open surgery but, when we asked about robotic surgery, referred me to Dr. Hu. After meeting with these Dr's, I had widely differing information on each type of surgery so I did two things: 1) I asked the nurse at BCBS to send me some papers on some more recent studies and 2) I met with Dr. Carpinito and Dr. Tuerk, both robotic surgeons, and with Dr. Dahl, a laparoscopic surgeon.
I started this journey thinking that open is the best approach and that robotic was just a new way of doing the surgery. However, as time went on, I found that robotic made more sense. The pros of robotic are the high precision of the movement and the flexibility of the robotic arms/wrists. The movement can be set to scale; for example, the surgeon moves his hand 4 mm and the robot moves 1 mm. This increases the precision of the surgery.
The cons include the steep learning curve for surgeons and that the surgeon has no tactile sense of what he is doing. The tactile sense is very helpful when determining how much of the cancer has gotten outside the prostate. Not all surgeons care about this. Finally, I have also heard that the camera for the robot is stereoscopic which gives depth perception while laparoscopic cameras have no depth perception.
So I settled on robotic, mostly because the precision gave an edge in continence recovery time and percentages. This was based on the more recent studies that show better results for robotic surgery, mostly studies published in the last two years. I had a very hard time choosing between Dr's Carpinito, Tuerk, and Dahl. All of the consultations were very good but I could only have one surgeon. I chose Dr. Tuerk because he learned the robotic technique in Europe and brought it here a while ago, does more surgeries per week than the others and has very good expected percentages for continence and potency results. However, my concerns were with St. Elizabeth's hospital as it didn't have as good a reputation as other hospitals like Mass General and Brigham & Women's.
About me (7/12/2011)
It is about 1.5 weeks till my surgery. Over the last few weeks, I have been occasionally having bouts of anxiety of varying intensities. Sometimes it is hard to concentrate on things that take focus. The main reason is the obvious: I feel like I am looking down the barrel of a gun in a Russian roulette game. In all likelihood, I will be fine (in time and with a lot of effort) but, well, you never know what will happen. I few weeks ago, I met with a good friend in the same situation who is choosing to go the watchful waiting route. He has good reason for doing so I can't fault him. However, listening to his motivations and fears stirred up a great deal of uncertainty for me about choosing to do surgery.
So I went back to the web sites that discuss why prostate cancer is over diagnosed and over treated to see if I could convince myself that it was better to watch. I couldn't because, at 49, I should live another 25 to 40 years and I don't feel lucky enough to give the cancer a chance to ruin that. The other thing that bothers me about waiting is that, since, in my case, there are no palpable signs of the cancer escaping from the prostate, I only have PSA tests to indicate when it is time to biopsy and only biopsies to indicate when it is time to treat. (Sigh)
On the other hand, we met another patient who is being operated on this week at the pre-op visit. His name is Dr. Tom (I don't remember his last name). Dr. Tom is an OB who has prostate cancer and came to Boston from Wyoming because he saw Dr. Tuerk at a talk and was so impressed by him. Wow! I hope this is a harbinger of good things for me. Good luck Dr. Tom! I hope your surgery was successful and you are recovering well.
A few days after surgery (12/26/2011)
I had robotic surgery as planned on 12/19/2011. The recovery was a bit tougher than I expected, in part because I expected something similar to my appendectomy (done in 2006). At 7 days I am still feeling a bit weak compared to me going back to work in 5 days (in 2006). I am a bit puzzled about the differences but I guess more "stuff" gets messed with for the prostatectomy or maybe I am just older. Sigh.
Working with the catheter required a lot of patience for LT and me. It required both of us to work together to change over from the day bag to the night bag and vice versa. One thing that helped was shaving a patch at the front of one thigh so you could repeatedly tape and un-tape the catheter there with just the right about of slack to keep yourself comfortable. Taping the catheter to your leg holds the weight of the bag. I found a taping technique that reliably holds the weight. The catheter has two ends that are outside your body. One is a drain and the other opening is to fill the catheter bag. If you start with a length of surgical tape about 6 inches long and put it at the fort of the catheter. Then tape each end all the way around each of the catheter branches and back over the fork in the catheter and then tape it to your leg. Put another piece of tape under the catheter but over the tape you just attached to your leg. Finish with a piece or two of tape over the fork but tucked in on the sides to hold all the pieces together.
The catheter is coming out tomorrow. While it is necessary, it is also a royal pain in the arse (and other parts). I am looking forward to bidding it good riddance.
Dr. Tuerk is a rock star. He let me know that he thinks he got all of the cancer as it was very well contained within the prostate. In addition, he managed to save both of those oh-so-important nerves. This bodes well for potency recovery. Also, while kissing LT, I felt a bit of stirring down there so I am hopeful on this front. I am not allowed to do Kegel exercises while the catheter is in but doing them has sensitized me to the muscles that are involved in holding urine. There are two that I can work; one is at the floor of the pelvis which are the well-known kegel muscles. The other is inside/ above the pelvic floor muscles. Before surgery, I found out that the inside muscles are much stronger in holding urine so they are worth trying to learn the feel of. Now, after surgery, if I flex very gently, I can still feel both sets of muscles that I have been training before surgery. This also bodes well. I will find out tomorrow if my hopes were well founded.
After Follow-up appointment (1/2/2011)
I had my follow up appointment on 12/27/2011. Good news. I got my catheter out !!! What a relief to be rid of it. I also got the pathology report. More good news. Positive margins for the prostate and no cancer in the other removed parts; seminal vesicles, lymph nodes, and fat cells. The final staging is T2c, Gleason 3+3 with a mysterious note about type 4 cells in some special pattern. Maybe I should be Gleason 3+4 ? Anyway, what a relief for me and for the family. [I think Mike means that the margins were negative - positive margins would indicate that the tumour had spread beyond the gland. - see BASIC LANGUAGE]
Since then I have had good news on the potency front. While it is too early to have sex, as I have been told by the doctors, it looks like it will work out OK when the time comes. As for continence, I am on two pads per day, occasionally three. Like most everyone else has mentioned, I am dry at night and mostly dry until about noon. Then sometime in the afternoon the muscles tire out and my control diminishes and sometimes disappears. Sometimes in rebounds a bit again towards bedtime. I guess I have been getting back to doing Kegels religiously to help counter this. All in all, this seems to be a very good first week.
Thanks and I hope the entries help someone!
After First blood test – 3/26/12
I had my first blood test March 2nd and the results were very positive; my PSA level was undetectable. It goes without saying that I am very pleased about this. In addition, I am as busy as I was before the surgery. However, I have times when I get this weird tired feeling that is different than the regular sleepy feeling, kind of the drained feeling like when you are catching a cold but are not sick enough to take the day off.
At the Doctors office, the intern asked about continence and potency. He asked how many pads I was using in a day. I had good news on this front. I have been dry since the beginning of February and haven't used any pads from about mid-February. However, I still have episodes of urgency from time to time and a bit of leakage one drop at a time here and there. I work in an office so this has resulted in a few times when I have had to leave meetings in at less than opportune times.
The doctor asked if I am having sex at all. I am happy to say that my potency is sufficiently good to have sex without Cialis but, well some things are different. First is that it takes more attention to get things started. This is not to say my interest is lower, but it is not so easy for it to become obvious. But LT is very helpful and patient with me. Also, it takes a lot of mental focus to maintain my erections, even during sex. If I let my mind wander, even for a short time, it is the end of the act and sometimes the show. However, using Cialis helps out a lot but, of course, this requires a bit of planning.
I asked the Doctor about some pains I still have at random times. These pains usually start in the prostate area and radiate to my legs or somewhere in else in my abdomen. It is surprising to me that I still have these pains after a few months but Dr. Tuerk says that this is normal and will go on for a while as there is still healing that needs to happen.
Apparently, this is quite a quick return to normal operation according to the Doctors' definition. However, the Doctors' definition of normal needs some upgrading. For example, continent is two pads or less in a day and potent is having sex with the aid of Cialis or the like. Even though I have surpassed these expectations, I still don't feel normal as I have to be careful about many things related to continence. For example, I go the bathroom much more than before and I have to plan my trips more carefully than before. LT says, I now pee like a girl. In addition, I have learned to not take sexual competence for granted, as it now takes either good planning or a combination of good luck and focus to make things work out.
At six months after surgery - 5/10/2012
I am at nearly six months since my surgery and I am doing very well. The episodes of urgency are a lot less and, happily I have had no accidents. In addition, my responsiveness and endurance in the bedroom has improved quite a bit.
I am doing much better than expected and am very thankful for it. I have had the prayers and good wishes of many friends and family and that is a debt I can never repay. Perhaps, it is better to pay it forward instead. I joined the local Relay for Life team and am asking for donations to help the American Cancer Society.
My one year anniversary of my surgery is in two days so I thought now would be a good time to post an update. In short I am doing very well. I had a PSA results of less than .1 about three months ago. As in the last test, I am very happy with the results. I only have to think about continence once in a long while. Drinking alcohol makes me have to concentrate a bit more but, other than that, I can go for days without noticing anything unusual. One big improvement without a prostate is how EASY it is to pee quickly. No constriction problems at all. Also, performance in the bedroom is nearly as good as before as well.
Checking in after 2 years ... I am doing well. I am very happy with how things are going. My PSA is at zero, I only have very rare episode of urgency, and I have nearly no trouble in the bedroom. I guest that at two years, I should expect to plateau. But its not a bad place to plateau at.
I have been a bit delinquent with updates. The main reason is there is nothing to update. I am still fine. However, I am a bit late in getting my PSA done. Will do it soon. As I noted before, I only have slight endurance issues and occasional urgency issues. I still have some random pains in my prostate area and legs but they don't last. They usually happen when I am sitting for a long time, like at work. Other than these issues, I am content.
I just got off the phone with a distant family member who was recently diagnosed with Prostate Cancer. He was upset and worried about his diagnosis, which is a bit more severe than mine. I was happy to help. Much of what I said is in my story. Good luck, T., I'm praying for you.
I am still fine, and still feel lucky about it. Best of luck to all of you fellow YANANOW members.
I am still doing well. I am healthy and aging gracefully (most of the time).
Mike's e-mail address is: vze57bs3 AT verizon.net (replace "AT" with "@")