I’m turning 62 in a couple of months, I live in Long Island NY, and now I’m faced with prostate cancer. I’m overwhelmed. I’m anxious, and I certainly haven’t been able to get any sleep since I got the results last Friday. I have low risk Gleason 6 that was in five samples out of 20, and a PSA of 6. He said it was close to being out of low risk but not there yet. So he feels monitoring it is not a great choice right now as I will just be kicking the can down the road. I’m sure like many, I’m looking at photon cyberknife radiation therapy, proton radiation therapy, and surgery (which I am leaning away from.) The doctor said I don’t have to rush, but frankly, I want to get on with this the sooner the better. I do have discomfort in the pelvic area which the urologist said is probably because I have a slightly enlarged prostate. I believe it’s inflamed as it never bothered me until he did a very aggressive DRE.
Anyway, I feel sick in the pit of my stomach as I think of all the possible problems. I know this is manageable, but I’m overwhelmed. I def need a support group and any kind advice you may have for me. I pray I can do the same for someone else someday.
Thank you,
Lew
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You've no need to rush into an early decision with your diagnosis, get more opinions and weigh the options up carefully and rationally all options available have their pros and cons
Thank you for your kind response. I know I need to slow down. It’s unfortunately not part of my DNA. I’m trying. I do have appointments set up. I believe my report said it was found in five cores. That sounds like a lot to me. And I was told it is multi centric and with family history I should move forward, but investigate all options. So, if I can just breathe and not panic, I may be able to make a sound choice.
First and foremost, please take a chill pill 'cause angst doesn't help the body and this advice comes from a 73yo who was diagnosed in 2015 as Gleason 10 and just bicycled 75.57 miles this morning to celebrate wife's 73rd Birthday today with my Testosterone undetectable 'cause I chose surgical castration instead of ADT drugs.
You should have a second opinion for biopsy results and if you had a blind TRUS Biopsy (old - OLD School) request a 3TmpMRI with guided biopsy if needed. There are other non - invasive tests that can be done also.
I've been through what you are now going through. I've heard it called "cancer panic." When I was first diagnosed, I saw a psychotherapist. It really helped me a lot, and I learned how to practice Mindfulness, which I incorporated into my daily life and I still practice.
The first thing I recommend is to decide NOT to decide. You just had some shocking news and, if you're like me, you are not sleeping well, and attributing every random ache to the diagnosis. I firmly believe that every man receiving the diagnosis should take at least 3 months before making any decision. Is it safe? YES!:
First, thank you and God bless you. I can relate to that term “cancer panic.” And yes, I have some arthritis in different spots of my body, and now I’m saying I have cancer in my bones. I’m making myself crazy. Here is the sad part. My wife and I lost one of our four beautiful sons four years ago to fentanyl poisoning. He was 25 and amazing. We died inside. After he died, for a long time my wife and I said the first one to die wins. And now that I’m faced with this, I realize my three sons on earth and my two grandsons need me here. My son, Eric in heaven doesn’t need me where he is. So now I want to be here for my wife and boys, and they have been through enough. So I am panicking. Thank you. I will try to slow it down. And I will look at the links you sent me.
It is almost unheard of for men with your diagnosis to die from prostate cancer. In the longest-running active surveillance trial in North America, 60% of men have not had progression of their prostate cancer for 20 years so far. Almost all of the remaining 40% have had local treatment (radiation or surgery) and are cured.
T_A, is there a link to that active surveillance trial on your blog? I certainly would like to have it for reference to other G6s. If you see this, thank you!
Hi. It's a real shock to the system. Please know you have some time to let the news sink in and as others here have shown me, it allows you to make more informed decisions. Investigate all the procedures, understand what the biopsy means, what your scores are and keep trusting you will know what to do. Read and digest. I know so much more now and it's only been 7 months and I have so much more to learn and understand. The people here are incredibly knowledgeable, kind and generous. All the best---
Thank you so much. My wife and I have been through so much before this, and I just want to be here for her and my and my three sons agyer losing one of my sons four years ago. So I’ve been in panic mode for sure. Thank you for your sound advice.
Sounds like you've been through plenty of trauma and will soon be able to focus on the skills you've developed through the hard times. Please take good care of yourself now and take the time you need to feel like yourself. Being in your good strong mind and heart will make matters better!
Thank you for responding and for your much needed advice to be of strong mind and heart. I thought I was resilient after the loss my wife and I suffered, but I can see now that I need to strengthen my inner spirit so I can make better decisions moving forward on this journey. Thank you again.
So glad to know you are connecting with your strengths and clarity. Getting diagnosed is a rollercoaster for sure. This I s a great site to read, get to absorb the many roads we all are on, ask questions and digest. You will find much wisdom and support here. You’ll find the way that’s right for you. Sorry you ended up here, yet glad you found the club.
Lew, sorry that you had to join our team, but welcome to a great PC support group. I’m glad that you found this resource so early on in your journey. I’ve found the advice, wisdom and camaraderie of this group to help invaluable.
Having a cancer diagnosis is always scary. And the tendency is to either go into denial, or jump into action. You don’t want to hide your head in the sand, but as pd63 recommends, you don’t need to make a hurried decision about treatment.
There are many knowledgeable members of this community who will chime in with their thoughts. I’d recommend listening to their advice and then consult with a medical oncologist before acting on a urologist’s recommendation.
Best of luck going forward. For most of us this disease is a marathon, not a sprint.
3+3 is almost 100% cured, so I don`t know why you are worrying? unfortunately reading some of the histories here and in Advanced prostate cancer community are heart breaking and makes me cry for a long time.
You need to take a breath like everyone says, and take this one day, and one step at a time. I was 62 also, my prognosis if you look at my biography was a little more difficult than yours, to say the least. So many more people on here have faced what you have, and we are all well on our journey to staying alive. I'm currently 69 and I have some of the best doctors and oncologists teaming with me. That's what you do. When they talk to you about doing things research it well. Tall Allen on here has a questionnaire that you should use as a base questions to get yourself going, and ask your oncologist or doctors questions now. Have an advocate with you. To say that four ears are better than two is so much more of a reality than you know. If you can't face what you have right now, when you're talking to the doctors you're going to forget everything. You've got this. Just take it easy, take a breath, and now just be so grateful that you're alive. Best to you on your fight.
Hi MichaelDD. I am grateful for you sound advice. I had been moving at lightning speed and I am now slowing it all down. Taking great advice from everyone on this site. I even dowloaded headspace on my phone so I can learn some meditation techniques. The breathing is certainly helping! I’m going to ask Tall Allen for the questionnaire. Thanks again.
I’m sorry you are faced with a health challenge at age 61, but I’m going to offer a different perspective. First, you’ve been blessed with good health (other than arthritis, apparently) so far and have a loving family. The loss of your son is a terrible, unthinkable tragedy. It is understandable that you feel your other sons and grandsons ‘need’ you here. In all likelihood you will be for a very long time.
Then again maybe not. But if you die in the next 20+ years, it will almost certainly not be from prostate cancer. You likely have a long time before anything must be done about this, if at all. And even if you do, it almost always grows slowly. There are many, many good options to slow it even more. New treatments are coming all the time, and there are brilliant oncologists to help navigate you.
If you’re truly invested in longevity I suggest shifting your focus. How are your habits? Track all aspects of your health on a regular basis. Know all your numbers. Most of all, be sure to get plenty of weight bearing and cardiovascular exercise as you age. These are the 2 metrics most associated with longevity by far. Quality of that longevity included. Hopefully you do this already.
Don’t freak out about getting prostate cancer, which kills 33,000 men a year in the US. Heart disease alone kills nearly 400,000. Both usually have no symptoms as they develop. Other things will try to come along and if God forbid they show up they’ll push Pca to the back of the line as well.
Thriving and surviving when older is hard work. Better overall health reduces your Pca risks even further,
Be vigilant about everything! You can’t just expect to live long because you ‘have’ to be here for your family. It doesn’t work that way. I doubt I have to tell you this, I’m just making sure. Onward!
Sorry it’s taken me so long to respond. I’ve been overwhelmed and I am now starting to get my act together and breathe some fresh air. I see there is still a whole beautiful world out there beyond my troubles. I know now I have options, and that’s a good thing. Will keep my discovery period going until I reach a decision that feels right and not rushed. This group has been such a blessing to me as I know it has for so many. Thank you for your reply. I am grateful.
Even with that diagnosis, which many men here would wish for BTW, you most probably will live another 20+ years and die from cardiovascular problems or some other more aggrssive cancer........... we can't say there is zero risk in waiting, but we know there is VERY little risk !!
Do a lot of reading re the option of active surveillance and how it might or might not be a very good option for you. There are beaucoup free videos on the PCRI website and, of course, many more on other websites. Don't let your urologist rush you on YOUR decision.
ALL treatment have possible unwanted side effects, as you seem to already understand. On the other hand, many men are minimally impacted by either surgery or radiation. Many men seem to be impacted by radiation side effects that don't become bothersome until quite a few years later. Overall, studies do not show a great side effect advantage for men who have the very expnsive proton radiation...... a case where theory does not match reality!!!
approximately 200,000 men a year join this club, but "only" approx 30,000 PCa annual deaths....and almost all those deaths happened with men who had much worse initial diagnosis!!
It is possible that an MRI would find a lesion with possibly a more aggressive biopsy result. Especially if your insurance will cover a prostate MRI, having that MRI would be a very good idea!!
Hi. And thank you for your response. Yes, I had an MRI which showed two lesions. One is 1.4 x 0.6 cm and os T2-hypointense w restricted diffusion. No definite hyperfusion corresponding to contours of lesion. The second lesion is 1.1 x 1.1 cm and also T2 hypointense restricted diffusion and no hyperdiffusion corresponding to the contours of the lesion. Not so sure what it all means and working on understanding it all now. The biopsy had 5 core fragments, all were Gleason score 3+3=6. Three say 5% of tissue, one says 10% and one says 20% of tissue.
I’ll just add a comment that was told to my husband and me early last year, in the beginning of his cancer journey: cancer is not a medical emergency, but it is an emotional emergency. Slow down and take your time with the diagnosis! You have a better prognosis than many guys diagnosed on here, and you have time to decide what will be best. Good luck!
I'll add my 2 cents: know it's really difficult to do and you want "it" over, but truly chill. Btw, I was on AS for 7 yrs until the numbers turned on me. Get 2nd and 3rd opinions from uro, radiation oncologists, and medical oncologists. Do your homework - online, youtube, and here. Then, consider pros and cons of each treatment: remember that docs know and will try to "sell" their specialty (uros are surgeons; they cut for a living). Personally, I like the Prostate Cancer Foundation videos. Oh, and when you make your decision, make sure you investigate and ask about such things as penis pumps, ED meds, and so on. Make sure you understand what docs tell you. Ask questions. It's your life.
Welcome. As others have commented, there is no need to rush. By chance, do you know what the % were on the 5 positive cores? You may also want to have your results sent to John’s Hopkins for a second opinion. Getting additional data is a good thing. People all over the country send their results there. Your urologist should have you do a 3TmpMRI to get a better idea of what is involved. That would be standard followup. I was on AS for 6 years before going to the IMRT option just a few months ago. Diagnosed at 55, treated at 61. I’m doing pretty well. As an aside, I looked into proton as well but insurances are hesitant in covering it because the outcomes are deemed not significantly better. Lastly, it would be a good idea to find an NCI Center of Excellence for your care. Being on LI, you have good options.
That’s good. Were there 2 others? They usually use 50% in any core as a possible cutoff for Active Surveillance. Data accumulation is important for prostate cancer. That will take getting used to.
I sent an overview with more details to the post. Did not have sent for genomics testing. Yes the Gleason samples are in different locations. So another reason to consider treatment now vs later. Family history. One grandfather had prostate cancer later in life and received radiation seeds. He died at 96 from “natural causes.” Same grandfather also had colon cancer in his late 80s that didn’t kill him. My father’s father had testicular cancer and was castrated, I believe. He was then in his 80s and lived to be 96 as well. My dad was a heavy 2-3 pack of cigarettes per day guy and never saw doctors. Died at 68 with cancer in stomach, colon, pretty much all over. Died three weeks after diagnosis. My sweet mom died at 73 of liver cancer. Didn’t smoke, but blamed living w my father for 18 years did it to her. Doctors believe it began in her lungs, butbwill never know for sure. Not sure as she never went for tests that doctors recommended. She was too busy taking care of her elderly mom who died at 96. My mom died three months after her mom passed. Was too late to do anything. So I am now staying on top of my issues, finally. Cancer is def in my family.
Dear LBRV -- someone here who waited several years after initial diagnosis to "do" anything as far as surgery, etc. -- i.e. I did "watchful waiting" for two years and finally decided to have an RP. I hadn't discovered this group yet, or I might have considered the alternatives to an RP more thoroughly. But--the point is--that two years did me no harm, I'm here a dozen years later with undetectable PSA, and have survived multiple other medical adventures. At 79 I'm still on my bike, still swimming, working out, and not retired (I won't retire completely until I can't do my work any more, since I love it). So, like everyone else has said, don't rush into a decision in a state of panic. I wish you luck, and some peace of mind.
First, I can’t believe the overwhelming response from so many. I am so grateful to all of you and this forum.
Some asked about more details. As I pull my head out of the sand and my body off the floor, I am learning more details of my cancer. I hope this sheds some light on my present status as I now breathe and slow down, thanks to all of you.
My MRI was done last month. I do have an enlarged prostate which I’m assuming is the cause of my pelvic discomfort. My urologist prescribed Cialis, which he said would help with BPH?
They found two lesions.
First is 1.4 x 0.6 cm which is T2-hypointense w restricted diffusion and no definite hyperperfusion corresponding to the contours of the lesion.
Second is 1.1 x 1.1 cm and all the same characteristics of the first lesion. It says prostate is grossly intact and seminal vesicles are unremarkable. PI - RADs Assessment Category: 3 - intermediate.
Biopsy showed five core fragments were 3+3=6, grade group 1. Three of them involved 5% of the tissue, one involved 10%, and one involved 20%. Seems to be on both left and right sides, so I’m assuming that is another reason they are recommending doing something now as opposed to AS.
I plan on visiting with a few different oncologists to get their opinions. And all of you have already been so helpful in calming me down.
Thank you all, and I am absorbing all of your valuable and heartfelt replies. I hope I can be there for someone in need someday as well
First, just like Tall_Allen and others have said, you absolutely MUST get a second reading on your pathology report from John Hopkins. Like he said, it is the gold standard. I can not emphasize that enough! I had some reason (w/o going into detail) to doubt my original pathology report and sure enough, John Hopkins downgraded me from a Grade Group 4 to a Grade Group 3, which changed my overall treatment plan (and emotional outlook!).
Without a true and verified pathology report, how do you know what you really have? How can you ask the right questions if you are not absolutely sure the path report has been correctly read? If the report comes back with the same reading (or lower or higher) you will feel comfortable about what Grade Group you are in and will be able to ask the right questions based on the correct Grade Group going forward.
So, go on John Hopkins website to start getting this done. It should be relatively easy, but I ended up having to go to the local hospital path department to actually get it shipped up there. Call and follow up on every step. Make sure this gets done.
Sounds like you got this super early so you have plenty of time!
Yes. I already started the form thanks to Tall_Allen. And I am following through on your advice. So I’m slowing down and collecting all the facts. Thank you!
PiRad 3 is unequivocal so it may or may not be cancer. Not sure about the verbage of the 1st lesion. This is not a bad report I don’t think. If it makes you feel better, my 2 bx’s had a total of 7 positive cores none greater than 20%. I’ve had 6 MRI’s and sometimes the PiRad in one doesn’t show in the next one. I, with the others, strongly suggest you have your bx slides sent to Johns Hopkins for a second. It’ll cost about $250-300 but it’s well worth it. I think your family history is something to consider.
If it was me, I would think of two points: 1) you are not really know for a fact that your cancer is 3+3. even though they told you that. They have no way of knowing except what they got and tested. That does not mean every cancer tissue is 3+3. lots of people had a 6 gleason score from a biopsy and when they did the surgery it turns out to be 3+4 or even more. I have seen it. 2) try to get a psma scan to make sure the cancer is still contained. There is a situation where the cancer is near the veins (pni) where the cancer escapes the prostate without touching the capsule and already out. listen to Tall_Allen and take your time to do the research. Lots of luck.
Thank you so much. I have already learned from this group to slow down. I’m certainly breathing easier now. Taking my time as I check out my options. These books will be very good for me, as I read everything about everything. Will order now. Thank you again for your advice and these books!
The Key to Prostate Cancer by Dr. Scholz was very helpful. It didn"t require reading the entire book but was written in a way where it took the patient to read what pertained to a patient's situation. Dr. Walsh's book was good as it explained terminology well for all situations.
I’m slightly younger but otherwise was where you are a few years ago. It can be shocking to wrap your head around the news of PCa, but as you see in the responses you are not alone and have many people’s experiences and input to draw on. For me, I went from your state and did Active Surveillence. Our trigger (me and Doc) was a PSA above 10. It’s somewhat random, but that is what some consider a move out of AS space and into Favorable Intermediate. Do your research, take your time, and know your decision points before you reach them, if you even do, so you are less likely to make emotional decisions. Anything you choose to do will have an effect on you so don’t take action lightly. But when timing is right, that effect may be minimal compared to ridding you of cancer. But before that point, probably not worth the effects - only you can decide that. Deep breaths, educate yourself, ask questions and check advice from anyone - medical folks or otherwise - against your needs and plan. Everyone has ‘their’ answer but only you have YOUR answer that you can be comfortable with. My brother did surgery but I chose radiation. We are both happy with our choices for different reasons.
You have no reason to be sorry. This forum is for everyone. I remember well the panic I experienced for at least two months after I was diagnosed. I could hardly function.
With your diagnosis, I feel certain you are going to be fine. It was caught very early. Please take your time and look at all of your options.
And May I point out that you’ve already gained something from this experience. You’ve learned that you want to live for your wife and sons. And you will. Wishing you the very best.
I'm sure 90% of men here are happy to help you as best as they can .... don't let a few negative comments here worry you !!!! Most here are just sympathetic to any man who must deal with this !!
Sorry to read about your diagnosis, but please don't panic.......there are a lot of well established treatments for PC available and improving every year, and your situation is relatively low risk compared to most, though it's difficult at first to appreciate the difference. And I can really relate to noticing small changes everywhere in the body more than before the PC diagnosis; I do that and they turn out to be just normal temporary aches and pains that mend. Stay calm and positive, absorb the good advice others have given here, and things will work out fine. 🦊
Thank you for your kind words. One person seemed concerned that my panic was unpleasant for some others on this site. I’m working on a better outlook and hope to be a positive force some day instead of a drain on others on this site. Not my intention. I’m just finding my way. I’m sorry for any angst I may have caused.
Thanks for the update on your MRI. THe general rule is that for a PIRADs 3,4, or 5 (most likely to be significant PCa), such lesion/tumor should be biopsied.....4-6 cores I believe. You should ask if any of your initial cores were definitely taken from your PIRADs 3 lesion(s).
That makes sense. I believe they were but will ask. The urologist specifically ordered the mri first as he said if there were any lesions, he wanted to hit those spots with the biopsy. Thank you
you have lots of good advice above. We have all gone through the shock and realize life isn’t going to be exactly the same. My additional advice is go to a major health science center for your treatment.. get a hotel room if you have to for a couple of weeks. Lots of docs can do surgery or radiation, but at the major medical centers, often in big cities, such as NY, Los Angeles, SF, you tend to find the most advanced and skilled drs and treatment options. I started with one terrific doc at a regional hospital, but went for a second opinion at UCLA,and wound up staying there for my treatment (sbrt plus ADT). Sorry to welcome you to the club.
Thank you for your sound advice. Two places that interest me is a well known radiation oncologist with NYU Langone Health. He does the sbrt and has done them for years. Very well known in NY, but he works out of a big facility in Long Island. I have an appt for this coming Monday for a consult. I also am waiting for an appt at the NY Proton Center in Manhattan. Starting to lean away from that decision, but feel the need to investigate. Taking great advice from this site and slowing down. So will continue my research.
I hope all of the above gives you comfort…and causing less panic for you…I need to remind myself that life is a journey…taking one day at a time! I am still here in 2023 at age 73…
In 2004 at age 54 i received the diagnosis of Pca…Gleason 3+3 and PSA of 6.9…not sure how many cores were positive i recall more than 5 or 6! I wasn’t aware of the results from the biopsy…
I had radiation without any hormone therapy. I had confidence in the radiation oncologist (this was in upstate NY)…The options (for treatment) have evolved and improved since then…I took 3 months to decide what treatment to do. I listened to a number of guys about what they had done.
Learn as much as you …there are many excellent you tube videos as well!
Thank you. I’m certainly finding comfort on this site. I’m blown away by the kindness and support this site has already given me. Your story is encouraging to say the least. Thank you again.
Hi Bro. I got my diagnosis at age 65, Gleason score of 8. That was 10 years ago and they have very happy years since. They can be for you as well. Make yourself look forward to dying at age 98 at the hands of a jealous husband. 😂
Haha. Thank you for the laugh. It was well needed. The men on this site have been incredible. I hope I can be of some help to others as my journey unfolds. Thank you for sharing your encouraging story.
I was diagnosed as a Gleason 6 in 2009, and no doctor, anywhere, has ever suggested that I needed any type of treatment. That includes famous surgeons at Johns Hopkins.
Now, after fourteen years in JH’s AS program, my MRIs are not suspicious for cancer, and my last two targeted transperineal biopsies found no cancer. I have never followed any diet protocols, but my PCa just gradually disappeared, as it has for several other long term AS guys that I know.
Relax and follow the good advice above. Your doctor sounds out-of-date on studies involving Gleason 6 men.
Your story is remarkable. I’m also so happy for you. I believe the reason for the advice to move forward is because it was in five core fragments and they were are both sides, plus I have two small lesions, and a family history of prostate cancer. I’m not sure how much all of that weighs into the equation, but it all kind of scares me. But I’m moving slowly and investigating all my options. I do have a consult with a radiation oncologist at NYU Langone Health tomorrow. From there, I will set up appointments at a couple of more hospitals, but not sure which one yet. I am leaning toward checking out the NY Proton Center in Manhattan. I will let you know if any professional recommends AS. Thank you again for sharing your amazing story.
Worst thing: rushing to get rid of the cancer tumors in the prostate. If you have low risk Gleason 6 that was in five samples out of 20, and a PSA of 6 then read up on Active Surveillance. That's what your urologist means by saying you need a more aggressive treatment than monitoring.
So sorry about your son; trauma comes to us without caring about your feelings.
“Anyway, I feel sick in the pit of my stomach as I think of all the possible problems. I know this is manageable, but I’m overwhelmed. I def need a support group and any kind advice you may have for me. I pray I can do the same for someone else someday.” You’ve expressed it well in a tight little bubble. As has been my experience here, everyone is here to help and receive help, you included and all the while your helping others begins now. Welcome!
Three stages of emotions shock, denial and finally acceptance... Took me about two months to get to acceptance. But once I accepted my diagnosis I decided to live life to its fullest. Now I live everyday as if it were my last as cliche as that sounds.. People die everyday at every age so value each and every day. Good luck...
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Experiences with combination therapy? (ADT/Brachy/SBRT)
Decision Time
2 years into stage 1 prostate cancer
