During a routine physical exam November 2001, my new primary care physician notified me that I had a PSA of 20.4 ng/ml. He immediately referred me to a urologist for evaluation and biopsy. I was 54 and had been in very good health, until then. The biopsy came back with a 4+4 (8) Gleason score. Two-thirds of the sticks were over 85% cancerous.

I was sent for a bone scan which came back negative and then met with the radiation oncologist. His visit was extremely detailed and helpful to identify what choices I had and how they would impact me. He also got me involved with the local USToo group at the Cancer clinic. Again, the best move for me. All involved believed the cancer was contained. I started Zoladex to slow the growth until treatment.

Through the meetings, I was able to learn about the results and side effects that the members experienced with their PCa treatment. It helped me ask better questions and eventually make the right choice, surgery.

In June of 2002, I had the usual pre-MRI to ready for surgery. The surgeon I had chosen was the best choice I have made to date. The relationship was upfront and honest, no beating around the bush. The surgery took 5 1/2 hours as he found that the cancer had indeed spread into my seminal vesicles and migrated up into the bladder neck. The lymph nodes were negative on initial pathology at the beginning of surgery, or he would have stopped there. The Doctor removed the prostate, SVs, lymph nodes and extra margin from the bladder. It was negative, which should give me a all-clear from a PCa perspective.

Post visits with the surgical urologist identified that I was doing well, enough for me to ask if it was all over? He did tell me that for now yes and I should enjoy every day, because systemically, this disease returns in cases at this level (20.4/8/T3b). He said we can make the decisions needed when the situation warrants. He believes in reducing the trama and morbidity to the person as much as possible. I agree with that too, but wonder about having to go through the next level of treatments.

My side effects were usual but improved over the 6-12 months. No incontinence from 2 months post RP, minor abdominal muscular pain while healing, and impotence improved to the point of minimal use of Rx to return to sexual activity. I mention that I could not have nerve sparing surgery.

My PSA from July 2002 until Oct 2004 was undetectable for 7 straight readings. Last fall I had my first 0.1 which was retested 2 times since. Again 0.1 and followed by a 0.2 this spring 2005. My Doc is suggesting that I may consider hormone therapy this fall if the PSA continues to climb.

During the past 2 years, I had been diagnosed with Diabetes, high blood pressure and cardio arrhythmia. All of which I have been able to get well into control and normal, with meds and a lot of exercise.

In the spring of 2004, my primary MD said I had a degenerative lumbar #1 after my complaining of low back pains. Prescription - keep up the exercise and careful on the back strain. My concern is now around the recurrence of my PSA and the far possibility that something else may be going on.

I have been very active in sustaining my health, weight, physical and mental well-being, and keeping a real positive attitude. I hope to keep ahead of this disease and stay on track to fighting it. I'm glad that I had recently found this group to help me with insight and hope.

Thanks to all and continued progress!

Rick

Currently, I am 59 yrs old and my PSA this month, August, was 1.0 ng/ml. I am testing every 3 months and watching the doubling time (PSADT) to determine when treatment will become appropriate. My last readings have gone up every 3 months, from 0.30 ng/ml Oct 2005, to 0.50 ng/ml , 0.70 ng/ml, to 1.0 ng/ml. I have gone into recurrence and now seeking the best treatment I can. With the original diagnosis as T3C - T4 from the pathology report, I was classified as metastatic. Surgery was successful, but we knew it would return. Now the problem is where is it?

Researching the many reports and trials be conducted for PCa, I have learned that Stage 3b/c in recurrence is considered Stage 4 and shows a 5-7 year probability for survival. Typically, this stage fails hormone treatments in 1-2 years. The biggest problem I have is that I feel really great, no pains and I'm staying in good physical shape. My goal is to get into a clinical trial or advanced treatment so that I may be able to 'get ahead' of this disease and maybe try to beat the odds.

I am currently a patient at the Dana Farber Cancer Institute in Boston, Mass. and have met with Dr, William Oh and next with Dr. Anthony D'Amico to explore what we can do next. It is not urgent right now, but they want to wait until I reach 4-5.0 so the tumor will be large enough to scan for the with an MRI & bone scan and see where it is. We are looking at some possible treatments with Docetaxel (Taxotere) and/or Thalidomide. I'm a bit nervous about the treatment, but more afraid of the consequences with the normal course, and missing the opportunity for aggressive treatment while I'm healthy.

For now, I get my PSA tested, do the things I enjoy and try not to dwell on the PCa too much, until my November '06 test.

In September '06, my PSA was 1.45 ng/ml, up from the Aug '06 1.0 ng/ml. The PSADT is approx 3.4 months, up from the 5.6 months earlier. Although this is early in the medical view, the doubling shows it is moving more quickly than we would like. I met with Dr. Warren Suh, radiology oncologist at DFCI, whom assessed that with the current status, it would be better to go into treatment now than wait until later. His view was this would be the chance of trying to control the tumor before it becomes more difficult to manage. He suggested radiation & hormones. Post bone scan, the team revised their recommendation to only hormones.

My bone scan showed micro tumors in the left hip socket and right abdominal lymph node. Not the places to radiate. I'm on Casodex & Zoladex for a year now, with 6 month bone scans and 3 month PSAs to see if it controlled. I'll be starting Zometa in February to help with any bone loss from the hormones. Overall, my health stays relatively good and with some of the side effects from the hormones, quite manageable.

For now, this is a conservative approach and offers time to monitor my PCa, giving me time to continue staying healthy and hoping the research advances with some of the treatments that are on the horizon.

Thanks and best to all!

It's the New Year and I am still doing ok. I have been on 3-month Zoladex treatments since Oct '06 and went through an 8 month series of Zometa to reinforce my bone integrity from last Feb-Aug '07. Now I get both treatments every 3 months. My oncologist & I discussed a 6 month 'off' cycle (holiday!) from the Zoladex on an annual basis, but since it takes 9-12 months to wear off, you never get the holiday! I asked to stay on the 3 mo. treatment plan, which he agreed was probably better. The side effects post-treatment hit me fairly hard for 7-10 days, but once I am passed that, I get on with life. My PSA has been less than 0.01 for the past 15 months and I currently try not to think about my cancer or it's attempt to return.

By keeping my focus on what I can do each day to enjoy life and not regret missing out, I tend to have more energy and satisfaction. The Zoladex takes it's toll as we know, but my wonderful wife & I accept that being together is more important. She retired 3 months ago and we are having some great times just enjoy things we had dreamed of doing. For now, we fight this together and appreciate the help from each other and all the wonderful people in our support group.

Another year has come and I am still enjoying the benefits of my treatment, both the good and the side effects. I guess it is not all bad since getting to do a lot of things you want to is always great. I've been on my Zoladex & Zometa treatments continually for the past 2 1/2 years. I get to see all the nice people at the chemo center every 3 months and appreciate that there are many others there for treatments of a far worsening disease. Life has more meaning when you realize the challenge others have to deal with and their struggle for hope.

I hope that my treatments keep working as there is a lot of great research being made and someday, there may actually be a way to get control of our disease. Over the last year, I have continued to be very active in my UsToo Support group, counseling, doing some presentations and just trying to help others that are beginning this journey. I remember how it helped me 7 years ago on my 1st diagnosis.

From our group, I was also able to help with a Radio 'Talk-show' on 'Health Updates' sponsored by the local hospital. It was great to try and get the message out to the community of people that may be dealing with or wonder what this disease is all about. It actually was fun but On-Air live leaves no room for mistakes!

I also had a very special privilege to be chosen as part of a US Congressional Medical Research program that sponsors millions of dollars towards Cancer research. Only a small number of prostate cancer survivors were picked to represent our PCa community and to speak out from a patients view of where all this money should be spent. So far they have earmarked over $840 million which in research . In total, over $4 billion has made it's way to overall cancer research!

I can only say that there is a very brilliant team of doctors from all over the world that really understand the workings of cancer cells. They are getting real close to finding the cause and a potential way of stopping the disease. As a member of the funding evaluation process, you have to study things I only remember back from college or university. Complex biology, genetics and chemistry! That was just to understand the research proposal and make a decision on it. It was very rewarding and to see the hope that may be coming.

Each day brings new views on life and how to enjoy it, and the things I can be involved with only strengthens my hope for a cure for all of us. I will continue to enjoy all of this and share the family & fraternal relationships we have made even more.

Best to all.

Well, it has now been 4 years that I'm on my treatment for the recurrence of my PCa. It has helped me to build a closer relationship with my Oncologist and the health team at the chemo center. We're all friends and working towards the same goal, to keep us all healthy and coming back for the next appointment.

As it was mentioned in a previous update, my Doc and I agreed to stay on constant treatment without a 'vacation' period in there, as long as I could tolerate the side effects, and just monitor the impact. My PSA has stayed at 0.0 over the entire time, so it is working and possibly my pushing the medical team when I was first starting the recurrence (as seen by the PSA rise) to begin a treatment regime, we may have sent the cancer back into remission. I don't really want to find out if it is by stopping treatment, but the side effects do have an accumulative impact on the bones, muscles, energy and sex drive.

For me, really thinking about how it has changed my life, the side effects are tolerable, short of the summertime hot flashes, but everything else is manageable. My wife is fully supportive and enjoys more to have me around to go on walks, have talks, share our family and have dinner with. We don't give up.

Over the past year, I've continued to be involved with a couple of prostate cancer support groups, serve as a support leader in UsToo locally and try to be there for others that are dealing with this disease. Staying tuned in on the research and breakthroughs the medical field is making is very encouraging and adds hope to my quest, survival.

More now than not, I choose when to think about my cancer and when to get back in the swing of doing the things that are important to me. I manage my health, diabetes and exercise to be in better shape. Being able to do things for my children and grandchildren is a higher priority and gives me satisfaction to help be a bigger part of their life. Reality is that a thing like cancer can take that all away, and my decision is to not let that happen.

For this year and many more ahead, I feel good, energized and enjoy the parts of life we are supposed too. Keeping a positive attitude, stay healthy, enjoy every moment and maybe beat this disease. I'm hopeful!

My best to everyone and keep fighting it.

As we just enjoyed the holidays and presents, I got to enjoy celebrating my 5th year of my treatment. [Rick is referring here to his 'salvage' therapy.]

A few days before Christmas, I went to get my "present" from the Oncology center, the Zoladex & Zometa treatment. The side effects I have learned to live with, as I knew they would be over during the holiday time. Looking forward to being with my children and grandchildren continually brings me the energy to bounce back to my normal life.

Over the last 5 years, I have seen the benefits of the treatment to hold off any progression of the disease. Lately, it seems the accumulating effect of the treatment has also started to impact my energy and stamina. However, some of this may be due to aging too. I try to remind myself to keep being active and try to get in the exercise I need for a more healthy condition. Walking and mild work helps me stay on track. Now with the New Year, I need to do a little more, for myself and my family.

With the other medical conditions I and so many others also end up with as the aging process goes on, it reminds me to always be aware of eating healthy, exercise, having a faith and keeping an active mind. Fortunately, my diabetes and cardio issues stay in control as I try to keep to my health routine. This is what I am able to do for my body and the only thing I am able to do to keep the PCa held at bay. The medical treatments have to do the rest.

My medical Oncologist is a great person and we have a wonderful relationship. He is completely aware of my overall health and gives me continual encouragement. I feel better and emotionally stronger thanks to him. With that I enjoy meeting with the many other men in our support group and sharing with their battle, hopefully offering some of the same encouragement. We all work together to help and help ourselves as we deal with this disease.

I look forward to many healthy years and friendships. Fighting this battle is easier with the support of so many other people.

Thanks to all and to a Healthy New Year.

As another year goes by, I feel very lucky to be doing well with my treatment. I have had several years of a '0' PSA and only have to deal with the side effects which I guess I have learned to accept. You learn to live with them and don't realize they are there. Just like typical muscle or joint pains that are more of a nuisance.

I continually am thankful for the early intervention, reacting early in my recurrence, to get the treatment started. I believe that was the key step to knocking down any progress the cancer was trying to make. Traditional approaches would have had me wait for another year, or wait for a 5-10 point jump in the PSA before starting treatment. By challenging the medical team and accepting the choice, together we have seen the results I have now. It might have been different and we would have fought a different battle.

Over the past year, I have been asked to coordinate and run our local Prostate Cancer Support group at the Cancer Center. I have been a senior member for 12 years now and feel very fortunate to have this opportunity. It brings a fulfillment to my journey and lets others share their journey, so we all work together and fight this nemesis. Creating a greater awareness is a great feeling in being able to help others learn and make some tough decisions for the treatment.

I look to staying healthy, keeping a 0 PSA and helping others for many years. Together we all fight this disease.

Just completed another treatment and I'm either getting used to them or just ignoring the side effects. Whatever it is, it is still working. I continue to believe that taking charge of my cancer treatment and starting my treatments earlier than the medical team would like is a big part of suppressing my cancer cells progress.

My outlet to keep from thinking too much about the cancer is my involvement with our support group. As a leader for the group, my attention focuses on the new and other members (survivors). We all deal with our aliment and find solitude and encouragement by being at the meetings. Some of us 5-10 year members. It seems reaching out to help others that begin their journey is a way of giving back for the added years we are enjoying.

At our holiday celebration, which included several of the various cancer groups, we all came together as a 'family.' We know about everyones grandchildren, travels and hobbies. These are friendships that would never have formed if not for caring about ourselves and fellow survivors.

It is great to have a focus on the future and enjoy those around us. Time is precious and we take advantage of it.

Rick

Hi to all !

Another year and my treatment is still working. It's 8-1/2 years on my hormone therapy and I continue on it. In fact, my oncologist says that I will probably stay on this, even if I had to move up to another therapy. Good thing I'm used to the side effects, though I would like to have some subside.

Last summer, I started to feel some minor bone pains in my ribs and talked with my oncologist as to what may be going on. Some of my blood tests should elevated levels for the liver tests, while I hardly have alcohol drinks. He chose to do a Bone Scan to rule out any random migration of PCa cells, and also see my Primary Care doctor for the liver.

Well, to my extreme pleasure, the oncologist reported that he could not find any of the cancer cells detected since 2006. It's possible that it's in remission! (small hooray!) Can't say how I relieved I felt, and that all the treatments really work.

My Primary did tests and ultrasounds to diagnose my liver results and told me it is likely to be NASH, a non-alcoholic steatohepatitis or fatty liver. Treatment for now is daily dose of 800 iu of Vitamin E. It seems to be working.

I realize that as I age, there are more conditions or symptoms we can run in to. With cancer involved, you tend to worry about each and if it is affected by other conditions. Hard to figure out, but I believe that if I can eat and exercise healthy, I have a better shot at fighting off as many as I can.

I am still guiding our USToo Support group each month and see the hope that some of the new members have hearing about everyone's cancer story. Our biggest concern is that there are fewer newly diagnosed men showing up. It actually may be a result of the advances in diagnosis to treatment choice being more defined. Radiation, Surgery or watchful waiting. The doctors have more confidence in the long term results, so patients are able to choose and get treated. We care about the emotional and longer term impact PCa has on the patient and family. And the surprise when recurrence happens. It's just like YANANOW is here to help us all by sharing and informing.

Enjoy all the moments and make new ones. Life can be great!
Rick

Hi to all,

Here spring has arrived and we finished our last snow fall, we hope. I just completed my treatment, again, last week. They had switched me over from Zoladex to Lupron. It appears patent for Lupron has run out and the manufacturers can produce it for substantially less cost. Apparently, $900 US less than Zoladex!

Now I'm watching to see if there are any different side effects. I had some reactions making me ache and much more tired for the first 3 days. More than when I was on Zoladex. So far, my PSA continues to stay at 0, undetectable, so I am happy.

They have watched my bone health with calcium and vitamin D tests, which show normal. I still take my supplements which I believe are helping. It's been 7 years since my Dexa-scan so it may be time to check this again.

Lately, my hips have been becoming sore and it seems I have some bursitis for which they have me in physical therapy. It's a rigorous workout that may help the muscles recover and the tendons strengthen. Only issue is they can't slow the age clock down, so it comes with the territory. We still do a lot of walking to stay fit.

My work with the cancer support group continues, as I have lead the team for a number of years now. We still get new members and some in advanced stages. We are able to share with them our experiences with treatments and the hope that the many new therapies offer. Research seems to be on a faster pace and they are looking at different aspects of the cancer or treatment impact.

For now the hope is to continue controlling with my present approach, but comforting to know there are more alternatives to work with. I really enjoy being with my family more and sharing in their lives. It's an invaluable support to me without them realizing they are doing some much for me.

Be well to all until my next update.

Another year has passed, and I'm doing fairly well. My switch to Lupron last year had several side effects with me. My blood glucose became very erratic, symptoms were more exaggerated with headaches, bone aches, dizziness and increase in hot flashes. We agreed to continue with a 2nd round of Lupron to determine if this was a brief result or how I responded to the treatment.

After my 2nd time, the symptoms were the same and my oncologist put me back on Zoladex. The impact to the diabetes control was more serious and we continued my previous which showed more predictable. I had the familiar symptoms and knew how to deal with them.

My year has continued on with a few unexpected events. My long-time Oncologist retired this year. I feel I have lost a good friend. The new oncologist is a wonderful replacement. And, this year's round of the flu/colds seemed to impact many people. Even with my Flu shot, I still had a combo cold which lasted for 2 months. All my readings were impacted, making it difficult to manage changes in my BG, BP and treatments symptoms. Best advice to myself. Don't change my routine for meds and stabilize until its over. I'd be chasing to many moving targets. It seemed to work.

As I get ready for my next treatment this month, I look to being more active in the spring weather, focus on bone & muscle health, and controlling my diabetes better. I turn 70 this year and feel fortunate to be at this point with a positive future.

Thanks to my PCa colleagues who have been in touch. Best to all.

Rick

As the years go by, I feel evermore fortunate. My PSA is still at 0.0 and in my 12th year of secondary ADT therapy. The side effects are quite minimal now and except for the hot flashes in the summer months, it's all tolerable.

My oncologist has taken me off of the Zometa which counters the Zoladex impacts of bone deterioration. It appears that long term use may actually cause a reverse effect of protecting my bones. We're doing a Bone Density test and in 2 years evaluate if I need to go back on it. I'm actually glad to get the break as it's the Zometa that gives me a flu-like side effect after treatment.

After the winter months, it was time to get into a more active exercise program, to help my health and diabetes. It's been 3 months since my wife & I have started and we feel great, healthier and stronger. For a couple of 70 year olds!

I continue to run the PCa support group each month, going on 12 years now, and we have a great group of members. We all look for answers and comfort and emotional support. Glad to be there for our survivors.

Since my last update, my Oncologist recommended that I could stop the Zoladex treatment, as the impact it has on the rest of my body, long term, may out weigh the benefits now. If I have a PSA rise again, then we go back onto the therapy. This causes any of us to be concerned if the ominous PCa returns!

I felt it was time to take the break and maybe feel better. We stopped last July 2018. I am now coming up on the 1st year without ADT. Actually now I am feeling my body come back to it's old self, but the term old means it is older and my muscles have a lot to do to get stronger. We still exercise 2-3 times a week, do lots of walking and the chores at home never stop, which is giving me lots of workouts.

Over the past year, My cardiologist has released me back to my primary Dr. My overall health is improved and I just deal with the daily care for diabetes. Don't we all. The things I have learned from dealing with cancer is that you need to be involved with your treatment & care, follow the advice from the doctors and guide yourself to better health. It's our life and we need to be in charge of getting better, if we can.

Our support group is still going on with several new members (unfortunately) but we all have a place to speak, learn & share. We actively help each other. We are all surviving and living longer thanks to the advances in medicine, living smarter and our friendships.

Thanks to our group here and all the focus on this disease. Stay healthy.

Rick

Another year and I'm glad to be updating my story. Two years ago, I stopped my ADT therapy to avoid some of the problems that it brings to the body, fatigue, bone impact and hot flashes. So far I feel good and my energy is returning as well as my testosterone. It helps with muscle rebuilding, energy and some recovery from all of this disease.

I can be more active helping my family with home based projects and restoring some of the life I was used to. The only drawback is getting another year older comes with aging issues, arthritis, hearing loss and being careful moving around to not fall. But, enjoying life.

Over the past year, my PSA has slowly shown itself at only 0.1 for 3 cycles. Learning that it can slowly develop again, we are watching it to see if I have to go back on treatment again for the 3rd time. At 73 now, taking in stride helps to keep enjoying the renewed energy and family fun.

I'm still involved as group leader for our local Prostate Cancer group, coming up on 13 years, each month. It is rewarding and helps all new members to our 'club.'

Best to all and continue good health.

Rick

Hello again. My journey for the past 2 years has been very interesting. I last mentioned that I stopped ADT treatments due to the risks from long term use. But knowing that the cancer may return, we were very cautious, continuing testing every 3 months. After 1.5 years off, my testosterone begain to return. Energy, muscle strength, still a bit tired and much less ED. Age brings the typical arthritus and mobility, but hey, I can be more active.

Last year getting through the Covid cautions, I ended up in the ER with severe sepsis and was in ICU for 4 days. Close call with almost not making it. Still recovering from side effects and balance issues. I win that battle and on to the next.

Over the past year, my PSA readings have been climbing again. From 0.1 in 2020 now to 0.3 last spring. We are just watching the rate of change before deciding what to do. I always have the previous Zoladex ADT to go on, since it worked for 12 years. But there are so many new treatments to use too. Time will tell.

I continue to run our monthly local Prostate Support group for over 16 years which has also brought call-ins from distant patients all over the country, and a few international. It's amazing how many men there are going into advanced stages and all of us needing help. I guess I'm really glad to be part of that support network. It benefits me to stay positive and hopeful.

Stay strong and healthy.

Rick

Hi to all, as of a year ago, my journey has followed a returning PSA with increased activity with the cancer cells. My PSA readings in 2022 started a rapid rise from 0.92 in June, 2.14 in Sep to 3.99 in Dec. My Medical oncologist had me get a F18 PSMA-PET scan to identify where the cancer cell was located.

The results showed a tumor in my pelvic bone only. So off for radiation, which was an SBRT of 3 hi-dose. Post PSA reading in Feb showed a 2.86 and a followup in April of 0.96. Good news, so far. We follow my PSA's every 3 months and make decisions on that trend of change.

My oncologist has put together a longer range plan which looks at a triplet therapy approach, should it return quickly (as seen before with me). There is also a new treatment of Darolutimide which we have already met with a research Medical Oncologist doing clinical trials in this area. I feel better knowing that we have a plan in place for the future.

Prostate cancer is a disease that has found it's way into many of our lives. The best thing we can do is to learn about our disease, understand the nature of its life alongside ours and be comfortable of any journey we have ahead of us. It helps us look with a positive attitude to the life we live.

I continue to run my PCa support group, and each month a new member shows up with the same concerns we all deal with. We can help others by sharing.

Be well and healthy

Rick

Well, another year has gone by and the journey continues. After having an SBRT radiation treaatment and seeing my PSA drop to a low of 0.33 from 3.99 we felt good. Minimal side effects. Then back to 3 months testing to monitor any changes. Last September the PSA number started to go up again to 0.58, then 0.81 and 1.04 in June 2024. We are waiting until the fall number before going into a treatment. Several choices available and high costs to get approvals for. Glad my oncologist is handling that part.

An odd observation with my cancer. I have had this since 2002. Initial diagnosis was T3b with possible breakthrough. I had surgery to get the tumor out which was T4 outside the capsule, into the bladder neck. PSA 0.0, but 2 years later it reemerged going up to 1.4 as T4 to my left hip bone. On ADT for many years. PSA undetectible for 12 years ! Then off ADT (as to impact on body/bones) in 2018. By 2021 my PSA was going back up again climbing to 3.99 as mentioned in last update. Had SBRT to pubic bone to rid the tumor. And now for the 4th time of emergence I see a T4 characteristic cancer somewhere in my body ! No side effects, just waiting to see what treatment to use.

The amazing part of this is that from the beginning, we sometimes feel this is going to be it, cancer taking over my life. Now 22 years later and facing another treatment series, the cancer never seems to go away, just somewhere else ! I still feel good, just a bit older but I can tolerate that. More arthritus which hurts and makes one think "is it cancer", no just old age.

I get a lot of my energy from leading our cancer support group now into my 19th year. The guys are great and we all need a little help. And they help each other through their struggles. A different camaraderie that we didn't know we would venture into. Glad we found each other.

Thanks to all dealing with PCa and helping. Until next time.

Rick Durbin

Rick's e-mail address is: rdurbin AT comcast.net (replace "AT" with "@")