I’ve been reading for hours but I’m an emotional wreck and just can’t make sense of anything. Any help is appreciated.
-Worsening symptoms for 3 years (frequent urination, burning while peeing and trouble to pee)
-February 2022 he went to the hospital and they did a blood test and they said it was BHP. So as long as they were not wrong it should mean he was cancer free in February of this yearprostate exam with finger from specialist in February of 2022 after hospital said it was BHP. Specialist said doesn’t feel like cancer. Have him meds to try and reduce the size. Medicine worked at first but then stopped. Apparently side effect of this medicine is that it can turn this into cancer.
-This week august 2022 (6-7 months after they said it was BHP). Another blood test and they said 226PSA. That is while he was on medicine so specialist is saying it would probably be over 400PSA if he was not on it.
-Next week he is doing his first test.. a bone scan. The fact that they chose bone scan first to me means … they suspect it has spread?He is 65 years old and I can’t imagine losing him. Nothing said here will change what’s to come but please .. any opinions ?
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FormulaRob
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Terrified of losing my dad .. in fact with a PSA over 200 I feel like it’s not far away. I’m being positive in front of him but I’m terrified and having a hard time thinking that this is treatable at this point
FormulaRob WROTE --- " ... Next week he is doing his first test.. a bone scan. The fact that they chose bone scan first to me means … they suspect it has spread?He is 65 years old and I can’t imagine losing him. Nothing said here will change what’s to come but please .. any opinions ? "
MY OPINION is for you to PLEASE TAKE A CHILL PILL!!!! and stop putting the cart before the horse.
Bone Scan is a STANDARD procedure as is CT Scan as is 3TmpMRI which SHOULD BE DONE !!!!
The biopsy SHOULD BE a Guided Trans Perineal and NOT a TRUS!!!!
Thank you for this wake up call .. I’m acting as if he’s gone already that’s how damn scared I have gotten. The fear has made me read into things thinking the worst. Appreciate this I’m going to have to trust the process and stay positive
My dad has a 1977 Pontiac formula haha.. red exterior, white interior and all original parts and paint. We’re also both very much into F1 racing and cars in general. We just watched the Belgium race on Sunday together
What a great relationship you have. As mentioned there is optimism to have many more great times. This condition makes us nervous with every test, but you will find it’s part of the journey. You are fortunate to be in a city with an excellent world-class research hospital. As a fellow Canuck, I would say that in our system you still have to ensure you advocate for yourself. Ask questions and get second opinions if necessary. Get informed as you are doing - lots to review - and good luck putting together a team that you are comfortable with. A good team with good communication will help your confidence. Regardless of diagnosis, also think about healthy lifestyle (nutrition/exercise). And take your mind off this by planning the next get together . Take Care
Yea AD2C is right. You have lots of good stuff going on there and plenty of prospects . You can’t tell by the PSA alone, mine was 1400-1600 four years ago and my first offer of care was inpatient hospice. Instead I opted for ADT , my first treatment of any kind , and it’s been 4 years and I’m still fairly robust and hanging in there strong ( considering yayahahahaya). Just my anecdotal perspective but looks like you can relax for quite a while.
Wow that really does show that there are definitely other factors. I’m glad to hear that you’re still living your life ! Appreciate the support and positive mindset. I wish for nothing but the best for you and your family. Thank you my friend , your strength is amazing
It will be fine. I was diagnosed with Type 4 prostate cancer, with metatastic tumors in the ribs. This was in Feb 2017. I am still kicking. My PSA was 250 at the time. I am on hormone treatments, the mets have not grown. This or better is what awaits your Father.
That is great to hear Jeremiad , this forum / community has calmed me down beyond belief. I respect that strength and courage that you’ve had during this journey and I believe your strength and positivity is contagious.. thank you for helping ease my mind ❤️
Now is the time to take time to center yourself in the now. Breathe in serenity and peace and breathe out the fear. If you have a higher power know that he has his loving arms around you. We will all die one day and we don't know when. We have today. Don't miss it! My husband psa has been 1700 plus and it's 11 now. He may die of this disease or something else but we make everyday count!
My husband was 49 and had a PSA of 677 the first time it was done- after 2 weeks if bicalutimide (PSA was not done before that) and many on this site had in the 1,000s. Your father's stats are not unusual here on this site- and bones is where prostate cancer usually goes, hence the bone scan. That's standard. My husband is now almost 55 and is still working and enjoying life. What medication did they tell you may cause/"turn this in to" cancer? Never heard that.
You are correct to ask "What medication did they tell you may cause/"turn this in to" cancer?" Who ever told you that if a medical needs to be reported to administration.
Appreciate you putting things in perspective for myself. It’s easy to think worst case scenario which is definitely one of my major flaws ..he did the cat scan today and then bone scan this coming Friday.. it’s still an uneasy feeling while we wait BUT people like you are really helping me. Tomorrow I will go over to their house and definitely show both my parents this forum because they are like me finding only the worst reads on the internet and basically putting us in a bad mindset.
Hearing that your husband is working and enjoying life really is great to read (congratulations).. I read this multiple times just because of how satisfying and calming that news is.. thank you for this reply .. I really needed this ❤️
Not yet unfortunately, he has a cat scan tomorrow and a bone scan on Friday. Biopsy they have him scheduled on November 3rd which we are trying to move up but they are refusing us
He had a ultrasound in February followed by a physical exam. Specialist said maybe they didn’t feel the tumour in February because the prostate was swollen
My guess is they want to do the bone scan first because if it has spread there is no need to biospy the prostate since he will need systemic treatment and not prostatectomy or radiation to the prostate. There's no point in putting him through an unnecessary procedure.
I understand how you feel as many here do. I was in shock when I was diagnosed with a PSA of over 500, but then found out how treatable prostate cancer is at stage 4. Here I am 6+ years later doing fine, still under treatment.
The best treatment for stage 4 prostate cancer today is a triple therapy with hormone suppression plus secondary hormone suppression (pill called Zytiga) plus Docetaxel chemotherapy. This gives the longest possible life expectancy. The harder you hit it in the beginning, the better.
Please let us know how things go. We are here for you to help and support you in this difficult time. We understand because we've been there.
Thank you very much for the informative and positive reply to my post. After reading through the horrifying depths of the internet I saw a reference to this site and I’m already feeling so much better. I’m so happy to hear your positive story .. I know the treatment definitely has been no walk in the park but the fact that you’re able to keep your life and enjoy and be there for everyone is such a blessing. Congratulations on your successful journey. Your information will be helpful for me dad when I speak to him tomorrow .. finally some news to lift his spirits. This means the world to me, thank you my friend
Feel free to private message me any time if you need support or if I can help with information about prostate cancer treatment. The thing to remember is you can still have a great life while managing this disease. Some of the best times in my life have been after I got prostate cancer.
I would recommend learning as much as you can, it's helped me a lot.
Thank you Ed, words can’t express how thankful and grateful I am to have found this community and talk to such incredible people such as yourself. I really am feeling much more positive and have already received some fantastic information in such a short amount of time. Keep on enjoying life , and have a good evening .. you’ve helped a complete stranger more than you know.. I lost 5 pounds In just days from the server anxiety and fear I have had since the news but posts like these have calmed me down a fair bit to the point I think I can actually get some food in me now .. thank you again my friend
Although I wish there was something more I could do, the only way to repay you kind people is to stick around this forum through the journey and forever more. Seeing how helpful everyone here is and informative and positive .: completely changed my mindset from Negative to positive in such a short amount of time.
My own friends and extended family have helped in no way.. I can understand it’s awkward and they don’t know what to say not to mention that they have no knowledge on the subject so i was feeling very alone before I found this community. I’m going on here unnecessarily but I just want to make it known how appreciated this all is.
Wait seriously ? Is this seriously true !? If this is true .. first congrat-U-friggin-Lations !!! That is so friggin good to hear my god . Thank you and keep on enjoying life my friend
Formula, Do you know that there is a member named Magnus68 on this forum who has completed 28 years after diagnosis of bone mets.
Its a fact that men live anywhere from 3 years to 30 years even with Bone Mets if they choose right food, ample amount of physical exercise and appropriate medical treatment.
Hi learnall , no I just found this forum yesterday and am in literal shock on how helpful this community is.
This is so good to hear how treatable this terrible disease is. Not even 30 hours ago I had some seriously terrible thoughts in my head .. I’m so grateful for posts like this. Thank you my friend
Thank you for taking time out of your night to answer a complete stranger and make me feel better. I may get more than 2 hours of sleep tonight for the first time in almost a week because you took the time to reply to my post. A bit of a different life I can understand, his health news isn’t the best news but if he can hang around and be happy and find enjoyment in life while seeing me get married and have kids and most importantly meet my kids… the idea that this may still be possible brings tears to my eyes
Hi Cateydid, thank you for taking the time to share your story with me during the absolute WORST week of my life. All these positive responses are really helping with my mindset. I’m literally doing everything that I can for him.. making calls, trying to improve test dates and I even managed to meet with a doctor for general knowledge.
It makes me truly happy to hear that you guys battled through and have been living a great life despite the horrific news back in 2009.
I’m sorry about that one regret that you guys have. I believe my father is only dealing with a urologist at the moment but then likely be transferred to a cancer specific hospital to treat (we live in Toronto Canada) so princess Margaret is the hospital best known to treat these cancers. I wonder if I should look into a oncologist as well.. I don’t know what that is but I’m just about to start my research.. thank you for bringing this up to my attention so that I can truly be sure to check all avenues
Recommend you read up on the PEACE 1 clinical trial. This is basically the latest and greatest proven treatment regimen for newly diagnosed stage 4 patients. This an aggressive treatment approach that offers the maximum life expectancy so far of any treatments previously tried.
Here's an article, bjt you can find more if you do a search:
Brand new to prostate cancer... scary if you aren't educated to know what, where and when to do something.... I remember the hugs and tears with my wife when we began this journey 5 1/2 yrs ago.. I started stage 4 with horrible pathology report after prostatectomy.. you will need an MO and maybe an RO. ( Medical oncologist and Radio oncologist). Oncologists are just cancer drs. Then maybe you can get to a prostate specialist. I have an appointment with one the 21st of Sept. as my current drs have just about run out of treatment options...I still feel good right now and have had a great time with my little shadow helper (6yr old grand son) this summer. He is now home to jump into first grade. Years ago I prayed " God just let me live long enough to make memories with my grand kids). So far so good. Saturday I will be trapesing the hills after huckleberries with my eldest daughter and friends. Life Is Good even with advanced hormone resistant prostate cancer....
Best of luck with your dad. I'm glad you found us to help take some of the scare factor out of this new trip you are on..
Sounds like you too started with a very big scare .. ugh the pain at that part of the journey is nearly unbearable. I’mSo happy to hear how far you’ve come since that point and how you continue to live a good life while positively impacting the lives of your loved ones around you.. keep on enjoying my friend .. I absolutely love this post
THANK YOU!! I will definitely ask .. I asked my dad to ask them but he forgot because so much on his mind so I’ll have to ask myself. If the name does come to mind please let me know
Formula Rob.. I have been reading through this stream about your concerns and fears and the encouraging comments and advise. I apologize if you know or have already researched all of this but just wanted to relate my story. I am now almost 76 years old.
I was diagnosed in 2015 at age 68 with a PSA of only 9.7 and given the option of continuing with a 'watch and wait' routine, having prostate area radiation or having a RALP - here is a link describing the RALP - drugs.com/cg/robot-assisted... .
So I had a biopsy of my prostate, taking 12 samples through the rectum area which is the best way, and these were then submitted to an independent lab for evaluation. Note here that your father MUST have this biopsy done through a GOOD Urologist, NOT a family doctor, as well as have an MRI to see inside the prostate area and around to look for any abnormalities that are suspect. The biopsy and lab eval will generate what are called "Gleason scores" for each suspect sample area. (You can Google Gleason Scores and see what they mean and how to interpret them.) Out of my 12 samples, I had 4 that were not good.
I decided to go with the RALP (as I thought 'let's just get rid of the thing (prostate)!" In the procedure, which was minimally invasive, done robotic-ally, which only involved 6 small incisions and was about a 3 hour procedure and I was in and out of the hospital in 3 days. The removed prostate was shipped to an independent lab for further analysis where it was discovered that my Gleason scores were actually higher than the biopsy had shown and that the cancer had escaped my prostate and was in the 'seminal vesicles' which are attached to the outside of the prostate. A month after the surgery I had a PSA blood test and my PSA was pretty good, less than 1.0, so I thought, but not what the Urologist wanted. He said he expected to see an 'undetectable PSA' meaning a reading of <.05. Note that none of this would have been known if not for electing to have the surgery instead of the other options.
Due to these revelations, I was referred immediately to the Oncology Department at UTSW in Dallas. My Urologist said that was his suggestion to have clinical experts take over with seasoned Oncologists specializing in Prostate Cancer. At UTSW in 2016, my oncologist explained to me that the 'food that Prostate Cancer feeds on' is TESTOSTERONE! in men and the main treatment is to reduce a man's Testosterone to zero! He started me on a short dose (30 days) of Bicalutamide (Casodex) which was given to prevent 'tumor flare or a condition that makes excessive Testosterone and at the same time started me on Lupron injections every 12 weeks with lab blood work done every 6 weeks. This process is what is normally referred to as 'Chemical Castration' I also was made to have a colonoscopy prior to starting my radiation therapy for the area where my Prostate had been. This was to assure that my colon area was normal and had no possible danger areas prior to starting my 8 week, 5 days a week radiation of the area where my prostate had been.
Rather than blather on, here is a link that pretty much shows what I was put on.
I will close with this: I have been under excellent care for almost 8 years now and except for some of the minor side effects from the Lupron, am doing well and continue to be monitored for any changes every 6 weeks. It is simply a disciplined regime of care that
I will have forever. I was told by several people who have had this disease and told, "Prostate cancer is bad but treatable and is the SLOWEST GROWING CANCER" You will die, that is a given, but it will more than likely be from something other than Cancer. You will die WITH prostate cancer NOT BECAUSE of it!"
Sorry for the long dissertation but wanted yo to know what someone close to your Dad's age has gone through and I will be glad to chat and update you if you ever want to chat.
TEXAS_dan2022 wrote --- " ... So I had a biopsy of my prostate, taking 12 samples through the rectum area which is the best way, ... "
NO- A TRUS BIOPSY IS NOT THE BEST!!!!!!!!!! Very little area of the prostate is sampled THUS often leaving MUCH WORSE PCa from being found. Transperineal Guided Biopsy can reach where a TRUS can not.
TEXAS_dan2022 wrote --- " ... Prostate cancer is bad but treatable and is the SLOWEST GROWING CANCER" You will die, that is a given, but it will more than likely be from something other than Cancer. You will die WITH prostate cancer NOT BECAUSE of it!"
NOTE -- We have had members die within 2 years of being diagnosed.
Holy smokes man I need to start off saying RESPECT to you and everything you’ve been through.. that did not sound easy. I had no idea that the standard biopsy could be wrong .. that part is just scary .. I’d imagine a lot of people don’t know that. Oh boy it sounds like this journey can get complicated but from 68 to 76 and going strong is what makes it all worth it . Thank you for sharing my friend and for the support. Again I just can’t believe how helpful you and others are over here. We don’t have a very supportive family except for my mom, dad and myself.. but all 3 of us are in shock and struggling so this community I can honestly say has saved me . I will be showing my parents this forum tomorrow night when I go over to their place for dinner.
Hey, ditto to the above comments. This is a wonderful assemblage of men with Adv PCa, spouses, and children who want info, inspiration, and guidance. We provide our treatments, experiences, thoughts, and many times links to the latest in treating PCa.
My saga began in 10/2014 when at 56 yrs old had a PSA @ 555, 10 days later @ 633, then in 01/2015 @ 840.2 #stageivpca with Mets to L ureter lymph nodes. No symptoms at all. Started ADT(Lupron/Casodex) and two weeks later Taxotere chemo per the CHAARTED clinical trials. Had 15 chemos in 2015 and PSA got all the way down to 0.1 in 2017. Abiraterone, then Xtandi failed, so MO tried 6 more Taxotere sessions.
Just had #14 Cabazitaxel (4 more to go) and PSA was still creeping up, last one at 4.2 with Testosterone at 13.
I'm 7 1/2 yrs in and I still work as a DDS, I am on a streak of 37 days hiking. I've completed two 100 km (62 miles) virtual hikes, a 64 miler, a 70 miler, and I'm about to finish the Mt Fuji 46 miler. I do workouts in the am with an elliptical and stepper. Lunch time PT (squats, crunches, planks eg) and then a pm hike.
There are many success stories here on HU, I hope that will get your nerves to calm down a bit.
When I told my kiddos about the diagnosis in 2015, one replied "I'll worry when dad worries"
Wow !! Congratulations on the success you’ve had . And continuing with a physically demanding life is awesome !! My dad loves to be active and always doing work outside around the house.. garden, lawn keeping, making wine (we’re typical Italian haha) .. hearing your story gives me hope that all his joys won’t stop just because of this stupid disease.
Thank you my friend.. didn’t know PSA can change so drastically in jsut days .. now I’m wondering what his next blood test will show. I will provide updates along the way as it could also help someone else going through something similar
I remember week one of my husband's diagnosis. I googled everything and it had my stomach in knots. Week two we were at Mayo clinic with a prostate oncologist. And I was guided to this site by my daughter. Google was not my friend. This site was and still is. I've found several members that I follow and many posts saved.
I think it's good that scans are ordered. I'm hoping you'll find an oncologist that specializes in prostate cancer. Be ready with your list of questions. One should be about having genetic testing done. Treatment decisions can be made with this information.
Breathe. Try to be optimistic and hopeful. There are plenty of reasons to be hopeful. There are a lot of treatment options and more on the horizon. Please post here or message any one of us.
YUP!! Hahah literally read everything.. it was good at the start in terms of learning some of the definitions and terms used but it quickly only harmed my mind.
Appreciate the supper and advice. I have come up with a lot of questions but good idea to write them down or I’ll
Forget once actually in front of the specialist/doctors. My dad is a bit stubborn and doesn’t want me coming to appointments .. I think he wants to hide bad news from me is the reason.. but I’ll have to force him to let me come since I’m here to help
Thank you SO much for the support I’m so grateful I really am ❤️ Best wishes to you and your husband I hope nothing but the best
This place is awesome. SoMuch to learn here. Make sure if it has spread to go to an oncologist that specializes in prostate cancer. If you let the group know where you are they will have a good Recomendation.
Thank you Schwah, this place really is awesome. Getting some very important tips and information early on which can only help me make sure my father is getting everything he needs. Going to enjoy the weekend with my parents and then next week the new test results will start rolling in. One step at time but hoping we will beat this
While it is a shocking PSA to see after your father was told it was BPH, you need to keep calm. As a carer, you can be his best patient advocate, if you can do this. It will help him to see you firmly by his side. I am my husband's patient advocate. I put all my faith in the urologist in Canada who told us for a year that there was no need to worry about rising PSA and then ordered a biopsy to take place months ahead. It was our insistence that saw it done earlier as symptoms of pain were showing up. Since then I read a lot, read Dr Walsh's book and Dr Myres and although some of the knowledge is updated, they helped me to understand the basic options. I read this site everyday without fail even if things do not seem directly relevant to us so that we learn. Good luck. Once hormonal medicines start, everything will improve quickly. Do ask if he should be on Casodex; the hormonal injection spikes Testosterone, and they start pills of Casodex for 10 days or so. Our urologist did nothing for two months and then started the pills, thus losing every more valuable time. There was no need to wait to see the scans to do that as he had the biopsy report with diagnosis. So be calm and be proactive. Good luck
Thank you so much for the reply and for helping me know what to sort of things we can kind of expect going forwards. The idea that he will start to feel better early into Hormone therapy is a bit positive. I’ve tried informing him with a lot of things I’ve learned here but he’s exhausted and just wants to wait and see what the results show he’s exactly dealing with first. So I’m just here continuing to learn so that I’m there for him with whatever the results bring. Thank you so much for taking the time and helping us during this challenging time
Most of us here can understand what you and your family are going through. My father was 58 when diagnosed and it was an incidental finding as he was in the ER for a bout of diverticulitis. His PSA was over 300!
We thought the worst , but most of the time this is not how prostate cancer works and this is not how God works. You can read my posts for more information, but with the PSA of over 300 the scans showed activity in few of his lymph nodes and left side of his pubic bone. Few months later after radiation and hormone therapy his dr. repeated the scans and nothing was visible. Dr thinks that he has arthritis hence the activity in the pubic bone. He was initially on Zoladex only and his PSA went to 0.06 . It slowly went up and his dr. put him on Xtandi few years ago. It has been undetectable evers since!🙏
When my father was first diagnosed I fell apart and cried all the time, then I looked at him and realized that he's the one that needs help and guidance and that we the family are the only ones that can do that for him. This is when I turned on my fight mode and never looked back. I still have weak moments but I keep on going. You need to do the same! Everything will be ok ❤️
Thank you so much for this post Brundo.. this is very relatable to what I’m going through now. Im just a wreck but when I look at him I realize it’s not fair to him.. I gotta be strong and positive. It ain’t easy but we gotta do it.
That’s so great to hear how successful the treatment was for your father !! Im at the crying stage right now still but hearing stories like this gives me a lot of hope.
Can I ask how many days and for how many weeks approximately was the radiation treatment ? I know it varies person to person but just curious since the PSA numbers of our fathers were so similar at the diagnosis stage
I won't lie to you. There will be many days when you will feel like a wreck. It will get better with time as all of you accept the new reality. I still get days where fear takes over, but I come to this page and read positive stories and feel better. I also pray and strongly believe that God never gives us more than we can handle .
The good news is that with faith and many treatments available your father will do great ❤.
In terms of radiation he had 40 treatments. I just read that you are also from Ontario hence the long wait times. I know what that feels like. It's really important not to sit and wait forever for those important appointments. There is always a way. Who is your dad's doctor?
Take it one day at a time I was diagnosed 2013. Was cancer free after RP for 7 yrs. Sept 2021, it came back with psa of 239 and mets to the Iliac and 1 Lymph node .. i was put on a regimen of Abiraterone, prednisone and xgeva injections and @3months pamorelin inj @ 6 months. QOL is quite good. I ride my motorcycle, go sailing, swim and lead a normal life. I am retired now, 62 yrs old.
It is not the end of the road. Keep your hopes up and be the pillar of strength for your Dad!
You are very strong and brave and I’m so glad it has paid off for you. You obviously have been through a lot with this awful disease but the fact that you battled is awesome to hear.. no way was that easy to find out it came back with a high PSA a second time. Love that you’re living a normal life now .. great to hear this my friend ❤️
You have every right to be concerned, But let the medical oncologist do his work and get the scans. You will have plenty of time to worry if they find Mets . Stage 4 with multiple Mets since August of 16. Never give in
Thank you Larry. Just going with the flow now and anxiously waiting for some results that should come next week. We will fight no matter what . Hate this crap but people like you give me hope and strength which I will do my best to pass onto him. Thank you my friend I wish you the best ❤️
You will see many success stories in this group about men who are long time survivors of PC, many of whom started with similar PSA numbers. My brother has had Stage IV since 2008 and he is 81 now! A good medical oncologist is key. I do feel that not scheduling a biopsy until November 3 is a long time. I am not sure where your dad is located, but please consider a second opinion at a prostate cancer center of excellence.
This group can help you find one. The next important step is a 3tMRI followed by a fusion transperineal biopsy.
Many centers will move up your timeline once some of the results of the scans your local doctor has ordered start to roll in, so start the preliminary work now to get him signed up.
My husband’s biopsy was within a week of initial consult with MRI at Mayo.
Best of luck to you!
You can turn that anxiety and sleeplessness into support and advocacy through this group and knowledge.
That is amazing to hear leebeth.. That’s so great to hear how successful your brother has been since the diagnosis. I hope for my dad to have the same success.
Thank you for the tips, I completely agree with you I am totally frustrated with the timeline of these dates. We have results from a CT scan and a bone Scan that should come in next week.. I can only assume the biopsy would be moved up if anything is found on these scans because Nov 3rd is so insane.. and then doctors will be on holidays for all of December I bet.. so we need to improve this. We are in Toronto Canada.: so although we have a lot of our medical bills covered cost wise.. the wait times are insane because not enough doctors and specialists and operators for the machines .. it’s terrible. Leadership that prioritizes high rise construction here over health care
I am so sorry to hear about the struggles with your system. Many in the US think it is ideal, but I know from Canadian friends that it is not. We have friends with dual citizenship who has had plans to retire lbnaughton@aol.com snowbirds, half the year in Canada. After a new diagnosis of a rare cancer, they can’t risk spending that time in Canada. So sad!
Best of luck to you, and hopefully my brother’s story helps you to endure this waiting.
I know all about fear and panic attacks. Please try not to think too much ahead. Now you will get the diagnosis, you are in the process. At this point there is nothing else, you should do. Once you get the diagnosis, planning starts. But please note, high PSA does not necessary mean, cancer has spread and low PSA is no guarantee for disease limited to prostate. My dad had a PSA of only 5.2 when diagnosed. Also, there are many treatment options available, but let us take one step at a time and wait for test results first.
Thank you so much for helping me put things in perspective. I completely went off the rails when we first got the news. I am now not myself but just trying to patiently wait for the results and not to get too far ahead of myself here. I hope your dad is doing well, thank you for your time and support my fiend . Best wishes ❤️
I echo what others on this board have said. 3 1/2 years ago I was diagnosed with a PSA of 2250. I had lung mets, bone mets ,a Pelvic mass and lymph node metastasis. Depo Lupron, Zytiga, and a couple of other meds. PSA undetectable for more than 3 years, no pain. Metastatic Prostatic cancer is often treatable, not curable, especially with the PEACE 1 protocol. Hang in there.
Holy smokes golfnerd… that PSA level was insane.// the fact that it’s undetectable after treatment is so friggin good to hear. I wish none of us had to deal with these crazy scares in life but hearing how strong people like you are and how you get through brings so much joy to me: I truly have so much more hope and positive thoughts during this difficult time becuase of amazing people like yourself. Thank you so much my friend ❤️
A bone scan is a very middle-of-the-road, expected test. Prostate cancer spreads to bone most often for some reason; that scan should confirm it. He'll probably also get a high-contrast CT scan to see if it's in his soft tissue.
I've had 4 or 5 of those in the last two years. Sure, the tests briefly cause anxiety but whatever the outcome, I tell myself I'll be ready for the next step whatever it is.
Fear is your enemy; more information is your friend.
My dad has told Me he’s mentally prepared for whatever they tell him. So I guess it’s good that he’s like that although he still seems shaken up and not quite himself this week so I know he’s more bothered than he is showing me. You’re right though, just need to continue educating ourselves so that we can handle any situation as well as possible. Thank you my friend
I understand you being frightened. I was when I was diagnosed in May 2020. I have found from following my fellow warriors that there is always hope. There are so many new treatment regimens that are proving to be effective at controlling the beast. Keeping a positive attitude really helps me get through the treatments. Also, knowing that I am not alone in the battle gives me strength. This space is a source of great information (most of the time). Also, I am a musician and I have found that when I focus on music, things are always better. You and your Dad should focus on your passion. Best of luck with everything.
Thanks pianodude and i wish you well for everything you’re going through. It does sound like they have a lot of treatment options so that definitely does help us take a deep breath . I agree with you.. we love music but can’t play it haha .. we’ve been just taking our mind off things with our regular interests.. makes us feel like life is still normal at least for now . Terribly exhausted from this only a week into it but going to stay strong and positive
Yes scary indeed. But you need to bite one small mouthful at a time, or you’ll choke.You should take comfort in knowing that you’re defo in the right place here to make your best informed decisions. I haven’t found ANYWHERE with the level of advise and community as this place. Don’t feel intimidated in not knowing anything wrt posting. You’ll 99% get someone to reply. The people here are remarkable really. It can get heated now and then, but it’s all with good intentions.
Thank you for the reply my friend , I was so overwhelmed for the first 3 days after the news. NOW although nothing has changed , I am dealing with it better. Honestly it’s becuase of everyone that has responded to me.. it helped give me perspective, hope and information which calmed me down as I suddenly feel like I can help my dad rather than just sit their in panic mode. Slowly replying to everyone here because the support was so needed.. I’m so grateful. Crazy how STRANGERS help each other like this just from the goodness of their hearts. I had a mentality in life that everyone only cares about themselves so this site has really proven me wrong
Hi there, we're very similar when it comes to anxiety, fear in dealing with dads' prostate cancer. That anxiety and fear have never gone away for me, just presented at different levels during the last 3 years. The support here is invaluable, specially for people with high anxiety level like you and me. I've come to this forum every single day to read and learn. While you're waiting for the diagnosis, educate yourself as much as you can about PC. Take care.
Oh yes the anxiety for me is so bad lol.. I mean for good reason with this situation but oh man I’m surprised I didn’t drop dead over the last week from the news.. I read your profile and see your fathers PSA remains undetectable.: that’s great to read. I hope you and your father are doing well and best wishes to you my friend. Thank you for the kind words and support ❤️
Around a year ago there was a promising trial for "Orca". I tried to get in, but it was restricted to Ontario residents. My memory is that it was for treatment naive patients. There were several places around Toronto where it was being done.
Dear sweet FR, you are reading and paying attention even when you were in panic mode! Pat yourself on the back. You can hit “save” when you see posts you want to follow up on or reread for comfort. You can follow ppl who you want to be sure to read. You can ask questions here or with chat. Learn what helps you be calm and best able to help your dad. Reading? Tea? A walk? As others said, this is a marathon and treatment evolves over the years. Pace yourself. Create a way to organize what you learn so you don’t get lost. Remember to save time to deal with rest of your life; you don’t want new fires to put out. Keep having fun w Dad. There are some resources that explain all the acronyms. I’ll post in a second (gotta move to laptop). You found the right “home” here and we’ve got your back; and dad’s of course. Hugs, a sister.
Thank you so much willowhawk , Your post has further helped me remain calm as I feel so very supported here. I will keep your words close to heart.
I also see your links with the acronyms, thank you so very much for that. I will be diving into that after work today. You are very kind and wish you and your family nothing but the best. Thank you so much ❤️
My initial diagnosis was stage 4 with bone mets at the age of 54 and I’m still here 8 years later. They have great treatments. If they do find bone mets you may want to consider getting a second opinion at one of the National Cancer centers if possible just to feel comfortable you are getting the best possible treatment. They are located across the country. This blog is a great source of info and hope as you hear that so many people are beating the cancer beast. One more thing, even if they decide that bone scan shows spreading please consider doing biopsy so they will have tissue available if they decide to do genetic testing to see if there are any genetic issues that can help them identify some treatment options. Good Luck!
Thank you so much Rbourn for the informative reply. I want to start off my saying congratulations on your successful journey , exactly what I needed to hear during this challenging time. Your strength and courage is an amazing thing to see
I’m learning about the process as I go here, but the biopsy they have scheduled for November 3rd and depending on the results of the bone scan and CT scan which should come in next week.. I assume they may possibly move the date up closer. I don’t think under any circumstance that they would skip the biopsy right? Sorry if it’s a stupid question I’ve just been so deep into reading about all this my brain is turning into mush.
Regardless your story gives me a lot of hope and optimism .. I just want to inform myself to make sure I understand things and that should help me fully trust the experts that lay out the plan for my dad once these results are in
Hello! - glad my story helped provide hope! There are so many treatments now that it provides all of us cancer patients lots of options for a long life. I haven’t heard of them not doing a biopsy even if it has spread since they want to identify how much cancer is in the prostate. Eventually they may want to use those same biopsy slides to do genetic testing to identify possible treatment options. Best wishes for you and your Dad!
By the way, it is BPH -- benign prostatic hyperplasia -- enlarged prostate. You wrote "Medicine worked at first but then stopped. Apparently side effect of this medicine is that it can turn this into cancer." Nah. Meds for BPH won't turn things cancerous. Did they monitor his PSA for those years he was having problems? It doesn't sound like it. Not all DRE's (finger exam) catch the cancer. Not to worry. You've found a good support site and this is a slow moving disease. Stay calm and learn as much as you can -- that's how you can support your dad. Keep us posted on the results of those tests. There are plenty of treatment options but it can be a challenge choosing the right one and that falls on the patient with this disease.
I will update on the type of medicine along with my own research of it over the weekend. It was news to me too but I want to make sure this community is aware of it IF it is even true.
Aside from that I will also post an update of his results that should come in next week.
Unfortunately his PSA was NOT monitored. They did a ultrasound and blood test and said it was BHP. Then months later they gave him a PSA test.. unfortunately my father didn’t even know what a PSA test was .. he figured AND TRUSTED that the tests they gave him to tell him it was BHP was the only tests that was needed. So yeah we don’t even have a baseline PSA. Dismissive doctors all around over here, truly frustrating
This is such a terrifying diagnosis for both the patient and their loved ones. Your response is understandable but it is important not to tell yourself the ending to a story that you don't know the outcome of. Try to take a deep breath and stay in the moment. That will help with both the panic, and the enjoyment of your time with your Dad. Sounds like he is a lucky man with lots of love in his life. And...breathe
Thank you for the kind words and help with my perspective. Always been there for my parents and everything but news like this still makes you think you could have done more over the years. Just such an unsettling thing to go through. I don’t know what’s to come or how things will go but after this community has flooded with me positivity and good solid information… I feel a slight bit ready to handle whatever we need to handle coming up.
I was in your exact same boat in January. My dad is my best friend, I couldn’t be any closer with him if I tried. Losing him will be losing a part of me that will never be replaced. We got the news his psa was 277 and had wide spread bone Mets and lymph node involvement, it was a surprise as he was in no pain (stage 4). However we took him to Sloan Kettering and he was started on Bicalutamide, and lupron. Then a few months later he started Zytiga and prednisone (he refuses to do chemo right now). His psa went to undetectable. He is working full time and still doing what he loves. The first 6 months is the hardest on the family as there’s so much uncertainty, but it does get better. If it wasn’t for this forum I would not be able to function. The best advice I got through this is to STAY OFF GOOGLE. They will list the worst possible outcomes of this disease. I educated myself on this disease through this forum, so many men are helpful on here. It is your best resource. I am so sorry you are going through this, but it really will get better. Best of luck to you
Thank you so much for the reply.:/ you sound so similar to me with your way of thinking. I’m so happy that you’ve stayed strong and your father has made a recovery.. that is such a great thing to hear ❤️
Yeah google literally had me thinking everything was over. This community has given me way more useful information than anything I’ve read elsewhere.
Thank you so much my friend, I’m not happy about what we now need to go through and face BUT if their is a happen ending awaiting then it makes it all worth it. I appreciate you being here and taking time to help me and supports me. It means the world and I wish you and your family nothing but the best my friend
I do not think you will lose your dad soon. 5 years ago my better half was diagnosed with Stage 4 Neuroendocrine Prostate Cancer.(His bone scan lit up like a Christmas Tree) It is a tough diagnosis. He was given 2 years to live by 2 different doctors. I was terrified, I learned to meditate. It helped a lot. My husband went through traditional treatment and we followed nutritional protocols. He is still here with no evidence of cancer 5 years later. You can have this same success with your dad. We were lucky to have a great oncologist with a creative treatment strategy. He made a big difference. We juiced religiously for 2 years. We adopted a whole food plant based diet. Of all of the books and DVDs..etc that I have bought my favorite was the Square One protocol by Chris Wark. It is simple and it includes lifestyle changes including attitude and support system. We used it integratively, along with traditional treatment.
I hope this helps. I will pray for you and your dad. The mindfulness meditation class really did help me. It taught me to look at this from a beginner's mind.
Wow… I am so sorry that you had to hear that news . So happy to hear that he beat the odds first given but wow.. no one should have to hear that kind of news..: I’m slowly replying to everyone here when I get time after work.. as everyone who helps me needs to know I appreciate them but when I read that you guys had to deal with that original news I just needed to respond now and say god bless .. what a battle and fight even for the mind.
Cheers to the success that you guys have found that is amazing to hear and thank you for the positive words . Thank you for your thoughts and prayers I will keep you and your husband in mine as well. We’re all in this together. Cheers ❤️
Thank you so much Jackie things like this gives me so much more hope. I am so happy for you and your husband battling successfully. I am definitely doing everything that I can
For what is worth to you, much of this has already been said, It sent me in a tail spin for 4 to 6 weeks thru all the dx, in Feb 2021. I am not here as long as others, But this place has been a good place to get information and to get help and advice. The bone scan is normal procedure. I am hoping and trusting God that I can keep my PSA very low for a long time. Ask questions here, when you do not know the answers, they are are not dumb questions. I am back to work normal at this time. I was 61 at dx.
If you are like me you thought death, will be tomorrow and you are not ready to let go. I still wanted to be here with family for awhile. It sent our family reeling for awhile also.
I try to focus on what I have, not what I do not have.
Hey Keith, thank you for your kind words and I too wish you nothing but the best.. I am sorry to hear what you are going through as I can fully appreciate how terribly hard it is. But your strength and courage and positivity is great to see.. never lose that. It truly sounds like we have a lot to be optimistic about. I did think death at first .. oh man was I in rough shape .
I wish you the best my friend thank you the reply. Enjoy the weekend with your family and loved ones. You’re awesome ❤️
So sorry to hear about your dad. I was also dx stage 4 right from the jump at age 48. I just turned 50 and in the best shape of my life. I unfortunately did not do well with the ADT hot flashes and found this forum to be invaluable with giving myself trials to make life more manageable. You are here, so your already on the right path. I pray the treatment is tolerable for your dad for a very long time. We are here if you need us.
I’m sorry to hear that you had to go through that but hearing how well you’re doing now a few years later is amazing !!
Just seeing him scared and worried is not something that I’m used to seeing so it’s hard for THAT not to make ME worried haha.
I am so glad I found this place as it was so needed.. it really was. I wish you nothing but the best going forward. Hot flashes is something I saw mentioned a lot.. But I did see some people give tips to counter it so hopefully you’re doing better with that
Thank you for being here with the positive and supportive attitude, it means the world to me
Well… all this effort and my dad has come home from the bone scan and has told my mom and myself that he is NOT going to tell us the results and whatever it is he will deal on his own.
So can’t go to his appointments with him and won’t know a thing about how bad it is and won’t be able to use any of the help you guys have provided me.
He is stubborn.. 64 turning 65 year old Italian what can you do. I don’t think he’s going to change his mind and will likely just get upset if we continue to try and push for him to let us help him.. I think he believes this is so that we don’t worry but this is worse .. I wanted to update you all as the situation updated through tests results and doctors .. ugh now we’ll be living not knowing if he’s dying or anything .. won’t be able to provide any support. I am just venting here as this is nothing any of you can help with .. just completely frustrating
I think you know the basics about the disease what his treatments will likely be. You don't have to see his bone scan or go to his appointments to know. He likely has stage 4 prostate cancer and if he follows the Standard of Care he should be able to live for quite a while.
If he does follows the Standard of Care, he will be on ADT shots at a minimum. You'll know this because he'll be getting hot flashes and fanning himself frequently. Hopefully he adds chemotherapy and a second-line anti-androgen. You will be able to know what he is doing and see how well he is doing. Hopefully he has a good doctor and you can still be supportive in other ways. He will need that too.
FormulaRob wrote --- " ... He is stubborn.. 64 turning 65 year old Italian what can you do ... "
My wife of 49 years, our 2 kids AND my sister/brothers are in agreement with me being known as a *Thick Headed Dutchman* but when it comes to my PCa, ALL THE WORLD CAN KNOW. I regret that your father will not confide in you but the fact that *He is stubborn* could very well be ingrained from birth and deviating from that mantra might be akin to being considered weak and non masculine. Continuing to *ADVOCATE for HIM* is the best you can do right now and hopefully some time in the future he might open up. p.s. - I too have Italian heritage.
Just wonder if M Schumacher would agree to his ideology?? Good LUCK.
You will constantly be providing "secret support" just by being you, by helping your mom, just by making life the best it can be. If he sees you are honoring his wishes he may eventually tell you more. Trust him to steer his own path, and be the best daughter you can be. Write us anytime. Hugs.
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