Proximal hamstring tendinopathy knocked me out of training for my second marathon. Physical therapy is helping me to conquer my overuse injury and dreams of hitting the magical four hour marathon finishing time seemed to have just been delayed until the fall. I even allowed myself to wonder if I could manage finishing in the 3:50 Boston Marathon qualifying time for my age group. Then . . . then . . . then. . . the message "You have a new test result on your MyChart" showed up on my watch. I had just dropped my son off at high school and was on the same section of busy highway that just over three years ago a phone call from my URO showed up on the hands free display. Like then, I waited until parking in the lot at work to deal with the contents of the message.
I logged into my account and hesitated before pressing the button to view the test result. I had graduated to PSA testing every six months due to a continual string of <0.1ng/ml results. You all know where this is leading . . . 0.21 for the BCR and the cells go wild. I've been pinballing through the five stages of grief for a few days, but the anxiety isn't at a debilitating level. I've managed to start making the necessary medical appointments, and weirdly look forward to attending the zoom meeting on Thursday of a local prostate cancer support group that I've been attending since 2019.
We have three children that we need to eventually tell about this. The oldest is at college about four hours away and the other two are at home (college and high school). They have experienced me and my wife (breast cancer) thus far triumphing over cancer, but also my father dying from a recurrence of melanoma. We'll likely be able to wait until spring break to tell them, since all will be home at that time. I've read some information, but would like to hear from anyone willing to share their experience with telling their children about BCR.
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farmanerd
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Six months ADT concurrent with ART. ADT was two three month injections of Eligard. ART was IMRT to prostatic fossa only. T was last measured on 1/4/21 and it was 498.
It may still be possible to cure you if you have salvage radiation to your pelvic lymph node area and about 2 years of ADT with it. I imagine you have zero extra body fat, which may be a problem - extra fat might create a protective barrier at the bowels. This may be a perfect job for one of the new MRI linacs. It's worth discussing with an RO.
I'm looking at NCCN Guidelines Version 3.2022 and that [edited for clarification: "that" means "EBRT +/- ADT"] looks like the upper path in PROS-10 [page] which is predicated on M0 or no imaging. Going back one level in the flowchart [on PROS-10], is risk stratification based mainly on PSADT and if so are there defined cut points? Does bone and soft tissue imaging only get done on high risk classification based on PSADT?
Hoping to clarify things, I added some edits to my prior post and marked them with brackets. So far it looks like my PSADT has an upper bound of 6 months and the next PSA test(s) should yield information on how much lower than 6 months it could be.
How I calculated my PSADT estimate:
<0.1 PSA on 8/2/21 -----> I'll use 0.1, which is just over the max actual value which could generate the reading <0.1
0.21 PSA on 1/27/22 ---> for convenience, I'll use 0.2 for PSA and 6 months for time between measurements
No need for fancy math. Six months after a PSA value of 0.1, my PSA was 0.2 which means my PSADT is less than six months. Why have I inserted "less than"? My convenient approximations used for my second measurement inflated the value that is yielded when using the actual dates and the actual second value. Using an on-line calculator, I get 5.54 months for PSADT.
Unfortunately, my approximation for my PSA reading on 8/2/21, which wasn't really an approximation, was the use of the maximum value of 0.1 in the possible range of values from 0.0 to 0.1. My PSA on 8/2/21 could have been 0.05, or 0.02, or 0.08, etc. which are all below the minimum detectable limit of the instrument, which is why <0.1 is reported. Just to get an idea, if I replace 0.1 with 0.05 and use the calculator, I get 2.86 months for PSADT. I need more PSA values to get a calculation of PSADT instead of just an estimate of its upper limit, but alone, that upper limit estimate of 6 months can cause anxiety and I'm certainly not pinning my hopes on the 0.21 being due to a gross lab error. I'm planning on having my next PSA test one month (or less?) after the one that resulted in 0.21.
The MSK calculator allows more than two PSA values to be entered, but it enforces using only values greater than or equal to 0.1.
I think you are overthinking this. Just request a PSMA PET scan. You qualify because you are recurrent (0.2). That is normally too low to detect anything, but with your fairly rapid PSADT, it might. Why not try?
The how you tell is the key. If you seem panicked they will panic . If you are calm and have a game plan in place, they will remain calm. Explain That of all the cancers PC is the best. Slow growing and lots of pharma money looking for new cures. You will be around for a long time you tell them as many on this site are
My wife and I rehearse what we're going to say to them, but they now immediately know that when we gather the family together for a meeting that the news usually isn't good, since usual stuff is discussed at the dinner table -- they even told us that when we had to tell them about my surgery in 2019 for a suspicious liver lesion. My eyes usually water up at first, but the tears don't roll, because it seems like a confession of something that I am sorry for or ashamed of -- it is not, but that background feeling arises until logic kicks in as the conversation continues. It is definitely good to have my rock, my wife, by my side during these times. Now that generates tears of appreciation and love.
Having initial diagnostics complete and a treatment plan in place helps, but the timing of events and information is not completely in our control: ex. MO appointment at Siteman is three weeks away (I'm most likely moving my treatment there from the local hospital). Not sure if a treatment plan will be in place by mid-March. What information do we convey to them in the case of no treatment plan by spring break? We don't want to delay or make a surprise visit to my daughter who's away at college, give her the news and then head back home to tell the other two children. I know, we'll have to adapt the circumstances.
No cancer is a good cancer. I understand what you really meant, but the phrasing is just a pet peeve of mine. Next PSA test will get a better read of my PSADT instead of just a likely upper bound.
Sorry to hear about the BCR. Having gone through this “new” diagnosis of cancer yet again I know it can be a bitter pill. Mine was undetectable for over a year and then has been coming back with some speed, last at 0.4. I’m now getting additional scans, researching a lot, and planning next steps. Good news is that there is still a lot of hope.
I shared it with my wife first, and then kids, then close friends. It seemed to help that I let them know I have no symptoms, and getting top notch care, and that there are many forms of treatment available. I also told them I would keep them posted as things develop. They all took it in, ask a question or two, and then move on and seemed fine. Not sure if this will work for you, but best of luck on the journey.
Thanks for sharing your experience. I waited until my wife and I both got home from work to tell her . . . absolutely not something that I wanted to do with a phone call or text. At work, I had to take a long walk at lunchtime to process some of the emotions. Had to tell my PT in person and out of an abundance of caution, she altered some of the exercises. Why? While the exercises were leading to a decrease in the tendinopathy pain, about two weeks ago, I had brought up that I occasionally was having some pain near SI joint while sitting, but it wasn't produced during the exercises. She thought that it was caused by trigger points in deep gluteal muscles and dry needling was being considered. Doubtful that there's bone mets at my PSA, but we postponed the dry needling and modified exercises. She said to let her know the results of any imaging. I also had to tell my psychiatrist during our zoom session (questions about ADD meds). These were good practice runs where I could gauge my emotional state and how effectively I could calm myself with a pause and a few deep breaths before starting the conversations. There are many options for current treatment, and absolutely more in the future. The newest NCCN guidelines have quite a few changes from those in early 2019.
Sorry about the marathon thing. I ran Boston twice, it was a ton of fun.
Before moving to the midwest, I lived for a good period of time in the Boston area and cheered for a few friends who ran the marathon in the bandit wave. Always wondered what it would be like to run one. Crazily enough I ran my first marathon last year at 60 years old and the dream was reborn. Is it worse running up or down the backside of Heartbreak Hill?
Heartbreak isn't all that bad. I had an elite level marathoner show me several methods of running downhill, worked well. A decent challenge is NYC and it's five bridges. If your looking for a fast, flat marathon, Toledo is an easy Boston qualifier. Good luck.
I could definitely use fast and flat . . . and a tailwind all the way around the course! Thanks for the recommendation of Toledo. Good luck to you too.
Sharing this with your children is hard thing to do. I have first-hand experience. I found that being upfront and honest about my own feelings helped. My grown kids were very understanding.
It's also important to let them know that your prognosis at this point is still good, prostate cancer is one of the most treatable cancers, even at stage 4.
For me, one of keys to having a good QOL with stage 4 prostate cancer is to focus on the present tense. I would really recommend working on that if you haven't already. It doesn't mean you don't plan for the future, it just means you LIVE in the present.
Thanks for sharing your experience with your children. Yes, feeling fear, sadness, and anger are all acceptable, I just can't let myself live in them. I need to let my children know the same thing and that if they are getting overwhelmed by the emotions, to come to us, or a friend, or a professional for help. There is no shame in asking for and receiving help, whether physical or mental . . . I know that from experience.
While working from home in 2020, I took a mindfulness and meditation course that our local cancer support group offered. It was very beneficial in managing the anxiety that I had around PSA testing time. Now I get to use it for post-PSA test anxiety. I'm glad that my PT started me on a rehab running program just over a week ago (intervals of run/walk, with slowly increasing proportion of running at a moderate effort as long as pain is below a certain level and never increases). It requires mindfulness during the walking phase to assess how my physical and emotional state is responding to the running. I can't just head out and run some fast intervals to rid myself of stress like I used to, but this method works as well and will help me immensely during any upcoming treatments as it mirrors what I did during my ART with ADT treatment in 2019.
I find that it's important to allow myself to go through the emotions and be disappointed, discouraged, sad or whatever but to try to work through them so I can get back to living fully.
My adult kids are very supportive in the process, just being there for me is often so helpful. I have gotten some therapy during the tougher times and that was really valuable so don't be afraid to reach out for that. It's a big adjustment to make. I was basically in shock when I got a stage 4 diagnosis at age 59.
This group will also be helpful as we are all in this together and support each other through the ups and downs. Stay tuned!
Kids are resilient. My kids are 21 and 19. Their mother died of sarcoma 4 years ago. That was awful. The only grandparent they have known died of pancreatic cancer 6 years ago. Their other grandparents died long before they were born.
I was diagnosed with PC 4 years ago. I tell them of my condition in generalities. “My cancer is in remission.” “My cancer is back.” “I’m on a new treatment.” Etc. They don’t ask a lot of questions, although they frequently ask how long I have to live. I tell them at least 5 years. They seem satisfied with that answer.
They’ve taken it all in stride. They do well academically. They compete athletically. They have lots of close friendships, and stable romantic relationships. I encourage them to be as independent as possible.
I’ve been amazed at their resiliency. I’m sure the same will be true of your family.
A proximal hamstring injury ...... these are often in motivated runners. The hamstring attachment in question is at the ischial tuberosity .... usually posterior-lateral. The following is one possible explanation for this injury. In an attempt to be more efficient & faster a motivated runner can over-stride in front (increase stride length by by reaching farther forward with the foot) which puts the attachment of the hamstring to the ischial tuberosity (sit bone) at a sharper angle making it more easily injured. Add to this the landing (3-5x the body-weight in force) in this compromised tendon position AND, with a motivated runner, the likelihood full muscular force being applied on landing in order to apply the most force throughout the stride (a mistake) and there becomes intolerable stress on the hamstring at the attachment to the ischial tuberosity. The cure is to shorten the front of the stride & lengthen the back of the stride with the greatest muscular force applied at the very end of the stride, just before & at "lift off" (when the body begins flying through the air). Top marathon Pro's get their gigantic stride length from a huge force at the end of the stride rather than reaching forward with the foot. The position of the hamstring tendon at it's attachment at the ischial tuberosity, the increased load on landing with a forward stretched foot, as well as a motivated runners propensity to apply huge force on landing all contributes to this injury. There are probably other reasons for this injury but I find this is a common one. Just some thoughts.
I feel for your anxiety and wish the best for you.I will have to say, however, that I was overwhelmed by the acronyms and details.
Obviously I am a newbie to this brotherhood, because I don't even know what BCR means. Google starts out with Benefit-Cost Ratio. Next it takes me to a bewildering site filled with technical jargon but no basic explanation. The replies to your post don't help me understand it either.
What is BCR, and why does it cause you such angst?
BCR stands for BioChemical Recurrence, which means that a man's PSA has risen above 0.2ng/ml after initially having had undetectable PSA after his prostatectomy. In most cases, this signifies that the cancer has returned.
Welcome to our brotherhood of warriors. It is the first mile of a very long journey that will provide gifts of personal growth and intense appreciation of life and all those you love. Your enthusiasm and focus will serve you well.And you are still potentially curable! Nothing promised or guaranteed, of course. Can your current doctor refer you for a PSMA scan now? You need to exclude evidence of cancer beyond the pelvis. Much more important than obsessing over PSADT dynamics. And get referred to the best RO you can, perhaps at the new hospital / cancer center? Maybe your prior RO could provide information on your risks and best approach to treat the pelvic lymph node fields. Prior scans and treatment fields will need to be considered in planning, wherever you go. No reason to interrupt your goals and training plan. Embracing life every day with your enthusiasm will send the best message to your family.
I truly been there with you and family that are so much part of your everyday life the job we endured to keep head up in many turbulent roads we encountered and some we very tough to make and do.Thise challenges made who we are today no matter what career we have chosen,my intuition is the family knows what you dealing with even if there no conversation.Yoi have been your whole life HONEST with everything I also know there with you through the beginning till the end. You are who you are.Down the stretch is iand our strength
We rooting for you
Ok ,no more racing for now . As one that has never done a marathon I salute what you’ve done . APC is a marathon for us all . It’s long winded and so must we be . You can put it down again . You deserve a break . You have the family to love you always . God bless! 🙏
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