Let me start by saying that it was my intention to wait for an official diagnosis for my dad before I started posting here. I found this group recommended on the Prostate Cancer Reddit Forum. I’ve been really struggling lately with absolute utter fear and lack of control (more on that later).
My dad is on his way to a PC diagnoses and general “guidance” from the urologist is that it’s aggressive. His PSA increased from 5 to 12 from Jan 2023 to Nov 2023. PSA increase was detected/tested when he went in for what they thought was a urinary tract infection (I swear I knew something was up then and urged him to go to another dr asap). He was referred to a Urologist, appointment to be January 18, 2024.
We live in Canada but my parents have a place in the US where they visit often. They went down in early January and decided to “get ahead” of things aapay for an MRI. MRI reveled a large growth (maybe not describing that correct), but I know it’s a PIRAD 5 and a lymph node was potentially “lit up”. After the MRI, he wasn’t able to pee (I guess it’s called severe urine retention…) so had to go to emerg and get a catheter. Took 5 tries to get it in! He flys back from the US with the catatheter on January 17th, appt with Urologist who obviously looks at the scans, does his inspection and says “yes, highly likely cancer and aggressive”. Urologist removes catheter and gives him flow max (tells him to also drink a shit ton of water, which he is doing). He got a biopsy a week and a half a go, but we are still waiting on results.
He messages us (the kids) this AM, saying he had to go to emerg late last night because of severe urinery retention and get a catheter in again. I just burst into tears and have been able to stop.
I’ve had a front seat to watching my father in law struggle with Prostate Cancer. I’ve watched him get incredibly sick and worn down. The day before my dad told me it was “highly likely prostate cancer” , my father in law told us that his is terminal with prognosis of months (spread to his bones, bladder etc).
I am not entirely sure what I am looking for here. But it felt quite cathartic to write. My dad is my favourite person in the world and the thought of watching him get worn down by this disease the way it did my father in law is just crushing me. He has boundless energy and is in good shape and I am just terrified for what’s to come. It feels like it’s taking FOREVER to get results on the biopsy to know what we are truly dealing with.
Thanks for reading my long winded post. There will likely be more to come as I find out more details.
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Cafu6
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Dear Cafu, Please take a look at my Bio. I have similarities to your Dad. I am almost 3 years into my diagnosis and currently things are stable. Feel free to reachout to me. Yes it’s scary but don’t lose hope. Sending you a virtual hug.
Thank you. I did take a look at your bio. Once my dad’s results come in I will compare (we are all so new to this - I am trying to get up to speed as quickly as possible). I’ll take a look at your journey. Thank you for the kind words and virtual hug. I’m glad things are going well for you.
The not knowing is so difficult and really easy to spin out. We've all been there. Take a deep breath and then two more. Once you know for sure what you're dealing with you can come up with a treatment plan. I'm glad you found this site. You'll find a wealth of knowledge and support here.
Finding your medical team that you trust will be key. Getting a second opinion is a good idea. Be prepared with questions-write them down.
I have members that I follow here and have saved many posts. Please know that many here have had good results adding many quality years to their life. Stay hopeful!
Caring about your Dad is so beautiful Cafu! A couple of quick comments:
1. Not being able to urinate is an immediate fright but this is something that urologists can figure out! And then depending on diagnosis and treatment, it either won't be a problem or there will be inconvenience but no emergency. See next item . . .
2. Your attention is drawn to the immediate urological issue. But from what you have written it seems there is likely metastatic prostate cancer. (I have this.) It is no longer a specific problem limited to the prostate with the usual treatments for the prostate involving surgery and radiation, even though these tools may be helpful. Metastatic prostate cancer is a system-wide problem. You need a specialist that is an expert in oncology first of all. I suggest that it's very important that you get a referral to a medical oncologist. As soon as you can.
3. By the way it's possible to drink too much water, and that can be very serious and even life-threatening. And it's not too hard to do that. I had an enthusiastic friend who was told to drink a lot of water before a procedure and ended up in the hospital. Just be prudent.
Your care for your father warms my heart. The blockage might be from BPH. You just don't know until he gets the results of the biopsy. I hope you'll write back then.
Cafu, I know all too well that "I can hardly breathe" feeling (my husband was diagnosed just over a year ago with Stage IV metastatic PCa). You are in the right place - this forum is a godsend. And Tall_Allen is an expert for many years who will give medically sound advice. I know it feels overwhelming and confusing. It will calm down and become clearer. Heartily second the idea of getting 2nd (and 3rd) opinions. PCa treatment has come a long way. Good luck and keep us posted.
Your dad is fortunate to have you. I managed my initial fears with multiple investigative tools and second opinions on biopsy pathology and imaging findings. I had two mpMRIs before my treatment decision and the findings were very accurate; in fact more accurate than the biopsy as my biopsy samples missed the worst bits. Genomic testing of the biopsy samples provided additional very useful information. Although not available eight years ago, today I would be seeking PSMA imaging before a treatment decision. I also put together an independent multidisciplinary team to guide me towards my treatment decision. All the best!
Hi Cafu, please try to find a medical oncologist. I know it's nerve racking, but until the biopsy results are in noone knows what your Dad is dealing with. He's lucky to have you.
Welcome to the club, Cafu! You will get there slowly. Its tough to witness your father’s agony, I hear you. But, it’s the positive state of mind all that you need and a warrior kind of mentality. I am happy that I attained it and supporting my father with same spirit. Research.. don’t lose hope.,, bring in all positive vibes…
Kudos to this marvelous forum for not only commiserating but also giving great strength to the suffering people.
hi there, I know how scary it is to worry about your parents. My mom died of pancreatic cancer when I was in my 20s. But I wanted to tell you that even though your father in-law is late stage with prostate cancer, your dad (if he is diagnosed with prostate cancer) will very likely live for many years. My husband’s PSA was almost 400 when we found out and he is doing really well 2 years later, so we think he has many more to go.
This kind of cancer usually gives more time for feeling well and being able to enjoy life.
Try not to worry too much. He is lucky to have such a caring son.
We are still alive and kicking! Gleason 8/9, Pirads 5. Had radiation 2018. Still travelling around Asia and soon to visit Denmark and Norway. No good worrying about stuff until you know results.
Where in Canada is your Dad. Vancouver BCCA Dr Bernhard Eigle is a wonderful knowledgeable Research Oncologist who my husband was referred to by his Urologist, we have been going on 12 years since diagnosis. To say don't worry is hard we have all been there. Stay strong for your Dad. Sending you good vibes from the Universe.
The waiting and not knowing is the hardest part sweetheart, my daughters were the same. Worry will tear you apart, look at the guys on here and take encouragement, come back to us when you have the results.
True is that we are more or less constantly in waiting and not knowing state, more then people without health problems. But it is possible to occupy ourselves with activities and thoughts that will give us some time to relax.Tough job sometimes.
Take a look at my bio- my husband had to catheter for over a year (ER 4x for retention issues and couldn't get catheter) prior to diagnosis. It's a horrible experience. Agree with some above- you won't know, truly, if your fathers is advanced or aggressive without further testing. My husband was diagnosed at 49 with stage 4 in his bones and it's been almost 7 years- he's doing well. There are many more treatments now than there were probably when your father in law was diagnosed. You found a great group here- hopefully you get to move to the 'Prostate Cancer" group and not this Advanced group💙 Look for Gleason score (8-10 is aggressive) and if there are metastasis. If PSA is low but there are metastasis it can also be an aggressive type. I know it is a huge learning curve. After almost 7 years I only allow myself a couple of hours in the mornings to be on this forum and to research new treatments/findings. Otherwise I go crazy. This group is my favorite.
Point taken. In fact while HU MC it's basically my only social media engagement where PCa concerned, my several hours a day average probably includes more than half on reading papers and posts - hopefully in high-quality media 😃
Hello, I had urinery retention for years but in 2005 I had a small procedure done where a super pubic catheter was inserted about 5 inches below the belly button direct into the bladder this is connected to a 750 ml leg bag which is held in place by two Velcro straps the bag is simply emptied via a toggle valve into the loo, I take Around 40 cranberries a day to prevent infection in the bladder as cranberries stop bacteria sticking to the bladder wall I also use Black Fermented Garlic capsules a supplement this is high in acillin the active compound in garlic that reduces inflammation in the prostate. so there are some things you can discuss with your father
You might feel helpless Cafu6, but you are not. Only the fact that you are here, seeking knowledge and support, tells me that you are a competent (yet worried) person. You and your father will continue developing knowledge and coping and most things will not be as bad as one can imagine. Waiting and not knowing are the worst parts. Doing is easier. Through the journey there are a lot of things one can do to feel better and be better. One step at a time, one day at a time. I know its not easy every day but if there is a secret I think it is to stay active and to stick to some of your passions (and exercise, allways!!)
He is lucky to have you. My husband was diagnosed in 20I6 with Prostate cancer. It has been a journey and roller coaster ride. He is still here today and cancer stable even after cancer metastasised to the bones. I would highly recommend Dr Yeung. She is out of Peterborough and Oshawa area. Not sure where in Canada you are. If your near London, Ontario I highly recommend Dr Chin. All the very best for your Father. He would in excellent hands with either of these Oncologist. Dr. Chin is an Oncologist, Urologist and a Professor. We look forward to hearing from you in the near future after your Dad's results are in.
I know the panic and feeling of helplessness all to well. It takes time to get beyond the initial shock, but you will get there. My husband, our daughters and I try to remain as positive as possible and don't let the negative thoughts dominate. My husband has scans every 6 months and yes, we get very anxious during that time not knowing what the results will be, but we remain optimistic.
This is a great group. I wish I had found it earlier on, so you are fortunate in that regard. Anytime you have questions, everyone here is to help. This is a wonderful bunch of guys, wives, sons and daughters who know exactly what you are going though 🙏❤️🌸
First I am sorry you are going through this because I know how hard it is on my own daughter. Your dad and I are lucky to have daughters like you. Second how about a Psa of 900 in November and then one of 5664 the following May. That was May 2022. Mets in lungs, spine, lungs, pelvis, femurs and lymph nodes. I was bed ridden. Right now I am getting ready to wash my wife’s car and feeling great. Think positive and positive things happen.
Call upon The Lord. May God bless you as He has me!
In the pathology report from your fathers biopsy you'll receive a Gleason Score. This number will be useful knowledge. The higher the number, the more aggressive the cancer. In 2015 I was diagnosed with the next to highest number yet I'm still here and, to see me, you'd never know I even had cancer! It's important that you not panic. Your father doesn't need to deal with that energy right now. I'm so pleased to see your active love and concern for your dad!
I understand your fears. I was diagnosed in April 2016. PSA was 133. Back and stomach pain were severe. Biopsy took two weeks to get results. Cancer was metastatic- into bones and some lymph nodes. Statistically I was given 5 years to live. Eight years later, I feel very good. Moved my care to Univ of Pittsburgh Medical Center. Options were given to me. I opted for clinical trial. First trial did not help at all. Second trial using immunotherapy was miraculous. PSA went to undetectable rapidly. After one year, I developed a form of severe vasculitis. Glad UPMC figured this out. However, I was removed from the trial as a result. The effects of the immunotherapy is still working a year after I was taken off. There are more treatments available when the cancer progresses again. Everyone’s cancer is different and how they respond to treatments. I also used Flowmax for a while. It was very effective. Don’t give up. If you have faith, invite the Lord’s help. Also, the amount of research and clinical trials for this cancer are amazing. Some facilities have much more to offer than others. Keep that in mind. Good luck!
I am so sorry you are going through this. It is frightening to watch someone close to you die of a disease only to see that same disease attack someone even closer to you.
As has already been said: "Take a deep breath" and a few more.
PC treatment is progressing by leaps and bounds. In 2014 I was diagnosed with Stage 4, extensive bone metastases, and given -- at the very most -- 10 years. Last August I was well on my way, with PSA over 100 and doubling every 3 months. They they talked me into trying a newly approved treatment. My PSA is now 21 and declining and I'm told to expect at least a few more years of high quality of life.
And know that your father is also scared shitless (been there!) and he needs your support so you need to come to him well armed with information and resources to help him find his way through all this. Hopefully he will be willing to participate in some sort of support group in person or on line so he can ask his questions and get answers from people who have been there. Just doctor-talk doesn't help much, in my experience.
If you live nearby perhaps you can interest him in something like Qi Gong or Tai Chi -- something to distract and calm.
I’m really sorry you are going through this. It sucks. It really sucked for me at first. Each scan brought more bad news ! PSA 3200, cancer in bones, cancer in lungs, a year to live!!!It has been almost 18 years. It’s not necessarily a death sentence.
I agree. I am overwhelmed by the kindness and support of strangers. I really just wrote for cathartic reasons, but getting so many reply’s and knowing that we are not alone in the journey this has been truly incredible (lots of tears shed but probably because I am just very emotionally right now 🤪)
Your Dad needs you to be calm and a resource. His situation seems very bad at the moment, but when I was diagnosed over a year ago - stage4 metastatic, I had crippling pain, could not walk and was peeing blood. My PSA was over 80. Radiation on specific tumor ended the pain. Then with multiple chemo PSA went down in a year to well under 1. The biggest assets for your Dad are to be positive, not afraid of dying, and accept this new journey. I am doing great and am very grateful for every day and all the help and care I have received. My cancer is not curable, but I know folks in my network who are more than 8 years on this treatment and doing very well. Did I say stay positive? Prayers to your Dad and you! ❤️❤️❤️
I know how you feel. I’m here because my dad is sick too…😢. Stay strong and think positive, be there for him. That is what I’m trying to do…and we must all hope for the best.
The biopsy will tell the story.. and from that, treatment options will be discussed. Statistical data on longevity are just that. Individual results may vary, and may very well exceed the norm.
So....you have to work with what you are delt...
Having boundless energy and in good physical shape is a great starting point. A good mental outlook and a willingness to stay the course a plus!
The commonality here is we all are dealing with prostate cancer. However, everyone is in different stages and responding differently to treatment.
There is no pat answer... You have to go with the fow of your situation. You make your decisions based on your values and the pros aand cons of proposed treatment options.
Best wishes, and do keep us posted on how things are progressing...
This really should be common knowledge: Your dad's and father-in-law's cancer didn't appear by chance. It baffles me that the majority of doctors still think that cancer is this great mystery; and surgery and radiation is how to tackle it.
We are made out of what we eat and drink.
Remove the carbohydrates from the diet. All of them. Including vegetables, fruit and grains. (They've finally made the connection between arthritis and consuming grains (bread, cereal, pasta)).
And no, we don't need fibre to poop. I can testify to that. And there's no such thing as essential carbohydrates.
Your dad and father-in-law's diet should consist of fatty red meat (grass-fed beef is choice #1), salt (rock, sea, pink), and water. That's it.
Simple to do but not easy if they've consumed the standard American/Canadian diet (aka The Slow-Poisoning Diet) all their lives.
I would wish them luck, but they won't need it as long as they follow the above; and stay away from doctors with their barbaric treatments.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I can testify to that. And there's no such thing as essential carbohydrates.
Urologist or Oncologist for 2nd opinion and treatment
Feeling sad and discouraged 
mCRPC, running out of options and scared !
new and looking for resources Stage 4 metastatic. Gleason 9
