Hello,
I'm new to this club. 51 years old with a gleason 8. Diagnosed April 5. I'm going to be treated at UCLA. I have 2 young kids age 12 & 14 and I'm panicked. I have not told them yet as I can't get the word "cancer" out of my mouth. I'm set for a PSMA CT this week and an MRI on the 19th. I'll then be meeting up with docs on 24th to go over results. Is a gleason 8 always gonna be stage 4?
Anyway, I'm glad I found you guys.
Coach,
Gleason 8 is not always going to be stage 4. Let's get you out of panic mode. My diagnosis was more than 10 years ago. I had one child in high school and one in college. I was 44 years old. I cried, I prepared, I struggled with how to tell them. I still struggle to show them Dad is still Dad. The point is, even with Gleason 8, you're taking the right steps, and you're going to see your kids do some great things. Hang in there!
Yost.
Thanks Yost, I found this site a few weeks ago and always feel better after reading your posts.
Exactly what Yost said, I was Gleason 10 with widespread metastatic disease in 2006 I was 49, You can beat this, and I believe you will. Welcome to the group, great info here, what was your original psa?
I was diagnosed with Gleason 8 in Dec and was given a choice between radiation and adt (two years worth), or Radical Prostatectomy. Had RP procedure in Feb and results were encouraging. PSA is now undetectable, but one must wait a while to see if any of those PCa creeps were hiding. If so, lots of therapy, but probably will be around on this earth for a while.
I am older relative to you (60). My kids are grown, etc, etc. How hard it must be on you to be thinking about this with kids of that age!
Gleason 8 was a stage T3a for me. If you had a biopsy, you should have some reasonable guess at stage.
My suggestion is - don't wait for them to schedule appointments. I proactively found ways to bump up my appointments (even my surgery). But in the end, a few weeks really doesn't matter. But getting things done as fast as possible just gave me a little peace of mind.
I know exactly what you are thinking. Be strong and optimistic! And barring really bad luck, you are just starting a journey that might be tough, but also might yield some unexpected joys too. I really felt down for the first couple of months, but I am beginning to have these occasional moments of joy because I appreciate the day. Those moments are slowly increasing more each day, so hang in there!
Thanks everyone for the advice and support. My PSA was 4.9 up from 2.5 the year before. Biopsy showed 3/12 to be cancerous 3+3, 3+4, and 4+4. All on one side of the prostate. I had the Biopsy April 5 and Doc said need to wait 6 weeks for MRI, which I'm having on the 19th.
with that psa, It would be a good guess you have localized prostate cancer and will be cured. Mine was Gleason 10 with a psa of 148.6, I was stage 4. 11 years ago, daughter was in middle school, now I am 60 and she is past her Masters degree. I have heard it said in the past spreading starts when psa is well over 10, except in the case of Nueroendicrine PC, which is fairly rare.
PSA is not necessarily a good indicator, unfortunately it is the best one for most men so it is used even though it produces many false negatives. I had even lower PSA than you when my cancer was first detected. The cancer was all over my prostate and was Gleason 8 and 9. Apparently when the cells are highly deformed they do not produce a lot of PSA which masks the cancer in the conventional PSA test for PC. I had my cancer spread to my bones, liver, and lungs when PSA was lower than the numbers you have, so I caution you about using the PSA numbers absolutely. I did find that the important thing with PSA is to watch the trend of PSA. If you graph it, then as long as it is steady or going down it is OK; while if it is increasing, beware. Some men use the doubling time of PSA rise to give them an indication of how they are doing after treatment, that is OK for non-aggressive cancers but I am not sure it is good for highly aggressive ones.
I do not understand the need to wait for the MRI although that should not be a problem.
I had the same PSA and opted to have Proton Radiation Therapy. Two years later, PSA is 0.15 and doing fine. I got the appointment on my own and have never regretted it. Read up on all the different treatments and the side effects that come with them. I had 39 treatments and no side effects. Check it out,
Coach,
What is your last PSA reading? That will tell as much about your stage as the Gleason score does.
As Yost's experience shows, it is possible to have a very serious diagnosis, but respond very well to treatment. There are men diagnosed more than 20 years ago who are still alive and symptom free. I hope that your disease is confined to the prostate region where it can be completely treated, or, if not, that you respond well to the systematic treatments that can attack the cancer anywhere in your body. The science is improving and there are some treatments available today that were experimental just five years ago. Hopefully more new ones will keep appearing.
My personal recommendation is that you talk freely to your children, your family, your friends and your co-workers. Many of them will be guided by you. If you don't talk about it they won't either and there will be a kind of silent standoff that doesn't do you any good. Be optimistic, but be truthful. Demonstrate that you are open to questions from them. I think your kids will handle this better if they are able to freely ask you about the disease than if they feel that there is a forbidden topic.
Best of luck to you and your family. UCLA is an excellent teaching and research hospital and a good place to get the latest standard of care.
Alan
I endorse every word of what Alan said about talking with your children and being open to their questions.
I also endorse all that Alan said. Our experience with cancer can be inspirational to someone else. Even get another man to have his prostate checked. I felt like you when I was first diagnosed, had to do something now to fight what felt like a forest fire overwhelming me. Take a breath and be proactive with your docs. They sometimes try to fit every man into the by the book standard of care. We are all unique.
And I agree that Yost is very positive and post uplifting information. You have miles to go on your path in life and its normal to panic at first. You'll settle in as we all have and learn to live life fully and appreciate all that you have. Sorry you had to find us
Thanks Alan, my PSA was 4.9. I think I'm still in the shock stage. My son is about to finish middle school so I don't want to ruin his end of the school year with this news. It's so hard, I get teary eyed looking at him now. That said, I'm ready for the fight.
I understand that different children are different. I suggest that you and your wife talk over what you think the children can handle and how and when it should be presented to them. You'll both want to be on the same page when talking to the kids. Consider too the possibility that your kids may overhear something that makes them suspicious that you are sick. So even if you decide not to speak to them now, you may want a plan for what to say when the time comes.
Your PSA of 4.9 is good news. It doesn't prove that your cancer is still confined to the prostate, but it's a good sign that it might be, and that local treatment can be curative. In most cases, a PSA of 4.9 will indicate that the disease is still small and local.
Alan
We are all so sorry you have had to join our 'club'. But I promise you that the caring people on this site will help you. They have shown me a lot of caring and compassion. And someone on this site seems to know the answer to just about anything you can think of asking. 😊
I saw a couple of replies that said there are lots of patients who have lived for 10-20 years with this disease. And with all the new treatments in development there is a lot to be hopeful for. My advice is to start reading a lot to educate yourself. That will allow you to have productive discussions with your oncologist. And to feel more in control. I always suggest reading Dr. Walsh's book entitled "Surviving Prostate Cancer". You can download it and it will help you understand the disease, treatments available for various stages,etc. Exercise and a health diet help a lot, too.
I'd also talk to your family. I was diagnosed 2 years ago at age 53 (Gleason 4+4=8, PSA of 227, metastasis in my spine). My wife and I have 2 kids, one was in college at the time and the other had just graduated. While everyone was initially in shock (myself included), you will find the words and they will be there for you. By the way, I'm in remission now with PSA of 0.8 and still working full time.- so there's hope! I promise.
When you talk to them, just be honest that you are on a journey and need their help. My wife was diagnosed with breast cancer when our kids were in middle school. Kids are a great source of support and love us dearly. They need to know what's going on because they care about you and because it effects them, too.
Please feel free to write us with questions. We are all there for each other. Someone on the site reminded me once when I was really nervous, like you are now, that it's not the number of days we have left, it's what we do with them that matters! Words to live by. And a gift from God! Our prayers are with you and your family. 🙏
Hope this helps you in some small way...
It does James, thanks.
Touching sentiments of support.Thanks!
I read more success stories than anything else. My husband is one. He's into his 13th year, stage IV, PSA 16.9, Gleason 9 or 10, very aggressive cancer, metastasized into his bones, received surgery, radiation, Lupron (still on it), Casodex, Zometa infusions. They treated him fast and aggressively and he's still going strong. Quality of life good, we enjoy every day. You're buying time, just in 12 years lots of positive news. Stay positive, try and lead as normal a life as possible. Best wishes and aloha.
Fantastic news for us all .Thank you...
Hey man! That is a heavy blow and I'm very sorry. It is a whirlwind of thoughts and no doubt panic is tops. I want you to take time to grieve, cry, feel sorry, angry, why me, so young, what could I have done, ad nauseum. You get my point.
Now that you've exhausted yourself researching like crazy, reading things that terrify you, and just driving your self nuts in general, take a deep breath. Try it ten more times. Now, grab that resolve you have deep inside you, and focus. You are now on a mission.
We are both on this mission. Diagnosed at 48, I have been through it all. But I am fighting and winning! You can too.
I've posted on this site often that I am happy to talk to anyone and share my experience. I am 51.
I have become good friends with a great guy on this site who I helped connect to my doctors at Stanford. Even with a thirty plus year time difference, we talk all the time about all things life, and the latest on our mutual foe.
Get in touch if you wish. I live in northern CA in Redwood City in six five oh, then San Diego area code, then cinco tres cinco nueve.
I look forward to talking with you.
You are a wonderful human...
Coach, welcome to the club and sorry about your diagnosis. I was diagnosed March 3, 2017 with metastasis PCa with a Gleason score of 8. And PSA was 415. I have bone pains in the hip and pelvic area. I started treatment on March 16th. My treatments are chemotherapy and A DT. Please Google " CHAARTED" table which is the,standard treatment for metastatic PCa. Hopefully, yours is still localized. I am responding well after 2 chemo. Both my urologist and oncologist said I would respond well because of my age, 52. I have a beautiful wife of 23 years and 3 boys, 22, 19 and 16. I cried when I was diagmosed. My wife and kids have been so supportive that I've come to embraced my PCa and not think about it. My advice to you is get educated now, be open to your loved ones and close friends. This group has been nothing but wonderful. Take care and keep us posted.
Nick
You are blessed with a loving family.Thats wealth!
There is a lot of fun in turning the tables on cancer through diet and supplements, in addition to the treatments you choose. Without knowing it, you have been a pretty good host to PC. That can all change.
The book "Anti-cancer, A New Way of Life" is the best book I have read to explain the whys and how's of making your body a very poor host for cancer. It is written by a doctor with a young family and cancer. I think you would find it inspirational, and it helps you be proactive and broaden the fight.
A tough cancer fight often brings your family together and helps your children mature. Your children are much stronger than you think.
Try not to be stressed that PC is putting your plans and obligations in flux. Stress hurts you all. Just play the hand you have proactively and have faith.
It may get tougher for awhile before it gets better, but you will get through it. I had "three months to live" after my Dx and made up a great estate plan. Now six years later, I make plans for graduations, vacations, and my new granddaughter.
Life is precious, be very nasty to your cancer, and love your family with a passion. My best to you, brother.
Bob
All good advice above. I was diagnosed in 1999, with Gleason 8(4+4) staged T2aN0M0. Now 18 years later still enjoying life. Remember, it's not the years in your life, but the life in your years that matter. Live it! And, good luck.
Sorry that you are here. Please know that there are a lot of men here with Gleason scores of eight or higher that are still here. Please do not worry about what Stage you are. It is not who you are. It may not be where your cancer is. There is no reason that you will not be there to see your grandchildren.
That said, you will need to take charge of your health. It is very good that you are getting scans done. Hopefully they will be negative and they can be used as a baseline. You should research information on the web - though be careful, there is a lot of bad stuff out there. Focus on technical articles coming from hospitals or universities and stay away from the posts that focus on secret cures (like baking soda and maple syrup) where they state the government, pharm., or doctors are keeping that information away from you. I used research to fight my with my surgeon to operate even though the cancer had spread to the pelvic lymph nodes. (Also had 38 rounds of radiation and hormonal therapy.)
Finally, still live your life! Enjoy your family! Even though I have advanced cancer, I still went on multiday bike rides, camping and scuba diving.
Hi Coach, my story - diagnosed last year at age 49, Gleason 10, spread to my bones, currently doing chemo and ADT. I have young children also., my wife and I decided to tell them I have a medical condition and the medicine might make me tired and make my hair fall out, but I didn't want to scare them with the 'C' word, so I haven't used it. You will find this site invaluable, I know I have.
sorry to hear you are in the club! My Gleason was a 10 and my staging was T3b (not T4). My kids were age 16,18 and 20 when I was diagnosed. I was honest with them without sensationalizing my bad news. I thought it would be more reassuring and less frightening for them if I was matter of fact with them. I am 7 months post RP, was briefly on Casodex and now getting lupron quarterly injections. It took all of this time to become comfortable (or recover) from the surgery. There are some wonderful things being done with PC today. We all hope for many successful years of life as we live with PC and it is under control. I made the choice to be public about my PC experiences. So far I have had two friends with family members receiving their PC diagnosis in the last three months so have been able to answer questions for them. Good luck with your situation!
DAvid
Pkafka, I had the Biopsy in San Diego but was unhappy with the treatment so I changed to UCLA. They never even mentioned an MRI in San Diego. Bases on this website I asked the SD surgeon how many surgeries he performed and he said 52. With that I headed north.
I had my surgery at UCLA as well. Dr. Reiter did it robotically. He is the best surgeon. Ask a lot of questions. Whatever is on your mind. Also if you have surgery make sure you understand lab results.
I was diagnosed with PCa at age 56. I am 70 today. Gleason 7(4+3), PSA at 6.8. Treated with seeds and externational radiation. Unfortunately, cancer cells had already escaped in to the vascular and lymphatic systems and 8 months later my PSA was 32.4 with mets to L2 & T3 of my spine. I immediately took an injection of Lupron.
I was offered by two different Radiation Oncologist standard hormone therapy. I asked, "If you were in my shoes, what would you do?" Both gave me the same answer. As a follow-up, "I asked for you know one?" The one in private practice did not. The other in academia, said" Yes, I sit on a Orostare Investigation Committee with one. The rest is history. I enrolled in a six month chemo trial.
I stopped Lupron injections seven years ago and still enjoy an undetectable PSA withresolved mets. You can beat this. Locate a Medical Oncologist who is a Prostate Cancer specialist and preferably a researcher. Most top notched Medical Schools have Professors who do research. I went the academia route rather than private Meducal Oncologists.
My advice, if you were to ask, get aggressive treatment. I believe that the odds of metastatic disease with a GS 8 is highly probably. I am not a Doctor, only a Survivor.
Kick the bastard,
Gourd Dancer
Diagnosed in 2000. PSA of 4. Gleason 5+4. Find a team of doctors that you can talk with and be part of the treatment plan. I found that young doctors who favored aggressive treatments were the way to go for me.
Nal,
check this guy out..I told him to try BIRM..maybe you can add some info
Gus
You are in the right place, doing the right thing -- researching this disease and getting encouragement and info from men who have been on this journey. I was diagnosed Gleason 8; 5 of 12: 6, 7,7,7,8 in one half. I was stage 2 with a very palpable tumor. PSA was 2.7. CT and bone scans were negative, suggesting containment within the prostate. After prior TURP surgery for BPH (enlarged prostate) I was told that I was not a candidate for surgical removal. 45 radiation treatments were recommended. After much research I decided on HIFU instead, as it promises least risk of quality of life side effects. It isn't cheap -- insurance / Medicare doesn't usually cover it so it was out of pocket for me. I am 7 months post surgery and I am doing fine -- no complaints. Good luck with your treatment.
Coach,
Remember what they say about PCa "most men die with it rather than from it".
You are in good hands here....
Good Luck and Good Health.
j-o-h-n Tuesday 05/09/2017 1:15 PM EST
My husband was diagnosed in 2008 with NH Lymphoma and prostate cancer the same week..his NHL was in the bone marrow and stage 4 and his gleason score was 6 with a PSA of 25. We needed to work on the Lymphoma first then after that chemo he decided to have a radical prostatectomy after the lymphoma was in remission so his body would be recovered enough to properly fight the prostate cancer. after the radical prostate removal surgery they told us according to all the extra nodes around there he was clear, 18 months later his PSA was up again.He had radiation with hopes that it had mets to the prostate bed and that would get it, but the PSA rose again.We have had every test imaginable and it is mets somewhere but we have no idea where. Here are some things that we found to be helpful.
1.Make sure you have a completely honest and caring Physician, trust me, if you have one red flag about his attitude, or no empathy then ask around to family and friends for a referral for one that will be more understanding to your situation and don't feel bad you are the customer. You need someone that has compassion to your situation. The prostate is a gland, so there are going to be hormones involved in whatever treatment you have or is recommended to you. Anytime we (yes this effects both my husband and I so we always go home and have a decision making powwow of sorts) we never make a split second on the spot treatment decision, we always say give us a couple days,we write down on paper our options and take home any material they give us, then we research and call back with our decision. My husband is the one to make HIS final decision, and I will always back his play regardless if I agree or disagree with it. I just always want him to make proper educated decisions. In doing this it also helps me understand what he will be going thru and how I can best help him, we are a team.
2. Before he decided on the prostate removal they offered him a choice of having the radioactive seeds and mind you that was a long time ago, things may have changed with by now, new facts and knowledge happens all the time but back in 2008 one radiologist told us that if he had the seeds, for a couple months it would be advised not to have any children within 2 feet of him, due to the radiation in the seeds, well right away my husband disregarded that choice of treatment, we had other grandchildren too and they knew just how sick he was from the Lymphoma treatment, he was not going to shun them away when they wanted to climb on Papas lap. That protocol may have changed by now, but just be sure that your Dr is aware that you have children that live in your house with you, most treatments are safe, but He/She usually have hundreds of patients, so don't be afraid to remind the Drs, they are human, and it will relieve any anxiety about this.
3. You will notice that you will have labs and scans usually a week or so before an appointment, we have a patient portal account on our computer with our local hospital and we pull up the results of those tests and print out, I have put holes in the pages and I keep the results in a big notebook at home. I highlight things that we feel that we need help understanding. them all written down..so at our appt we can ask those questions trust me we would forget to ask something on just about every visit.. Now I just open the book and have them right in front of me. We also take that notebook on vacation with us, just in case he gets sick away from home. Those Physicians can have those results from your home Dr faxed to them,but it can save time, and if they need to do labs or tests they have something to compare the results to, because if it is after working hours they may not be able to obtain them until the next day. because my husband has 2 different cancers some of his blood cells are permanently affected, If the physician didn't have the old labs to compare them to he may be shocked, but to us those levels are his usual.
4.Have fun, enjoy life.. in our house we have a saying "The show ain't over until the fat lady sings". It feels like forever ' the waiting game',the scans and the tests, but once you have that all together and a plan of action is in order, you will be able to take a deep breath and have a more clear view of the situation..My husband says that mentally If the cancer can't catch him then all is good, and he is not about to allow it to take over his life, he knows he has mets, but it is not over until the fat lady sings and right now he has ear plugs in so he can't hear her..(our household joke). Never forget to laugh and be happy. We consider only 2 cancers a blessing, some people out there are trying to deal with 3 and 4 cancers, so it could always be worse. All we would have to do is visit the nursing home down the street, to see just how blessed we are.
I hope this helps you out, right now you sit there with a clouded mind, but it will all clear away after your test results come in and you get a plan of action.
I tend to agree with what others have said, you are in a pretty good position with a low PSA score. As you have heard from others, many have been in much more tenuous position at diagnosis and are still doing fine 10 years later. My PSA was 89 at diagnosis with mets to the nearby lymph nodes. So i was pretty panicked and feeling the same way you are. That was in 2015. I'm now facing possible biochem recurrence. But I've been reading so many articles on recent advances in diagnosis, treatments, etc. that I'm feeling very hopeful. I was told at the outset that there is no cure for Stage 4, but based on the rate that advancements are coming out, I think there will be soon. So, my advice is to not panic, don't focus on "old statistics" that try to predict your future, and dig into all of the newest treatments coming out. Realize that even for those of us with "aggressive" PC, it still means years of life. Years of life means hope. I would be very confident if I were in your shoes. Good luck!
Don't panic, there are a lot of treatment options for you. I was diagnosed at age 46 I am now 71. It's scary at first, trust in your children.
I try not to use the "C. " word either.I was # 4 met in bladder ,2lymph nodes,and urethra blocked by pc tumors.Non op ,did RT ,still on adt ,1year clear.Its possible to hold this at bay if you are diligent in living healthy. We are all permanently changed, the emotions and taking you testosterone is a battle for some , some others handle it they say "easily" I fought myself to accept my lot and to let go of that invincible facade that I had of myself..Once we reach mid age, most of us have some health issues to deal with.Pc is tuff for me because many things like strength ,endurance ,stamina and imunity have all been challenged by treatments and no T.
Do what you feel is best,get good info and you will choose your path to recovery.This is possible for you .Not with out effort,you will be tested in every way .Dont give into fear,anger and negativity and you will get through..inform yourself and be proactive.,I believe that our condition can go either way. It's up to us and our actions..and of course some luck and the help of whatever you believe in ,keeping faith and hope is most important..Your love of family and their love for you can heal ..
My husband was also 51 at dx with Gleason 9, distant mets into the spine, etc. We don't have kids, and I can only imagine how hard that is. You are going to UCLA, and they must have a cancer center and support network. Look into that, including a patient navigator and a social worker. The social worker should be able to help with talking to your family. I'm guessing they already know that something is going on, and the longer you don't tell them, the more they will guess (maybe at worse than it is).
There are so many variables in your case. Gleason 8 isn't great, but it's much better than 9 or 10, and it depends on where it has spread, and then how your tumor and your body respond to meds.
You could wait until you have a clearer picture of what will happen but let them be there for you, and you can be there for them through this too.
Coach
You are seeing some vary good responses in your replys. There are some things that are critical for mentally battling cancer and it's effects on your families life. You need to stay positive knowing you may very well die of something other than prostate cancer. There are loads of new approaches being worked on to defeat pca including work with your own DNA. There are also available several drugs that can fight depression and side effects from the diagnosis of cancer.
We are all your friends here and will gladly be there for you in this fight. Ask your questions and someone will help. We aren't doctors but have had experience with almost everything you would ask. We have some of the most knowledge people in our group. There are very knowledgeable people here who can tell you about alternative natural treatments that work but studies aren't being done because big pharmaceutical companies can't make money by pattining a natural substance.
Your friend Dennis
I am a Gleason 9 diagnosed in 2011. 12 out of 12 cores positive. Initial psa 5. Have received many forms of treatment. Now with psa <0.1 for 2 years- complete remission. Keep the faith. pmichael
Remember that, when asking for opinions, they are like A$$holes. Everyone has one and mostly all stink!!!! So.....here’s mine.
Your children don’t need to hear the word Cancer at this point!! Kids are taught drama, its not inherent!! They can easily understand and accept that you have a infection, a flu, just have a pain, an anything.... But the word “Cancer” caries a “worst case” stigma with it!!!
I have adult children but I am extreamly close to my 6 grandkids now at 2, 6, 10, 12, 12 & 18 years old. Close emotionally and in proximity with them being around us all the time. I used my PC treatment as a life lesson telling them that I didn’t keep a cut clean and it got infected!! They question me often and I can speak freely. “No you can’t see it, it on my private area” “It’s coming along well” “ I have to get another shot next week” NOT ONE LIE!!! The 18 year old, an adult, is aware of my condition.
You have a bunch of testing to complete yet, to determine your actual treatment. For the majority of patients, treatment can go virtully undetected by their children. May take some tears of the clown at times but it can!! Maybe with help at times!!!
You are obviously now and will be going through some very emotional times, why would you want to burdon them with that!! Possibly effecting their school work, social life .... who know how / what a kid thinks!!
I did not ram my opinion down their throats. My children wholeheartedly supported my request that the grandchildren do not need to know more than I offered them!
I actually had some tougher than normal side effects but swollowed them up and now that I’m completing my HT, I ended up with a very good prognosis for recovery, with my grandkids none the wiser and unscathed!!!
The very best of luck and Gods Speed
Jim
Father recently diagnosed with metastatic PC
Recently diagnosed 
Just diagnosed with prostate cancer.
Father 67 was just diagnosed with stage 4 that has spread to bones! 
Newly diagnosed with N1M1a 
