Hi, anyone here with this stage/grading of prostate cancer? Can I please ask how long it’s been since you were diagnosed, what treatments you’ve had, how your quality of life is, and how you feel. My dad has been diagnosed very recently and it has spread to his lymph nodes and both lungs and I’d really appreciate just hearing real life stories please about living with this cancer. I’m in the U.K. and his chemo starts next week and he’s been having hormone therapy. I’m very keen to just hear about your experience rather than the medical side of things. He’s also only 51.
This also sounds like a weird question, but do you ever get to a stage where the cancer is just kind of there, a fact of life, without it being the only thing you think about? Does the sadness/fear ever stop?
Thank you everyone.
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Qwerty673
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To try to answer your last question . Only once the pc is suppressed or in remission can one really take a breath. I’ve been there over four years. I was 53 stage#4 Gleason 4+4 t-4 which meant prostate walls breached with tumors . Kidney failure from pc tumors blocking bladder and urethra . Non op . I did 8 weeks Imrt and double adt . I also did a 360 flip into a holistic diet and nutrient routine to this day . That’s just me . I have a lot to live for . My wife then my girlfriend married me with tubes out of my kidneys and a foley for over a year. Nice honeymoon . But her love along with drastic changes have kept me here passed everyone else’s belief . He has you , he’s in good hands . Love rules . Nothing else matters . Every living thing on earth sooner or later must perish . Love now matters and your love for each other is eternal . Live for the here and now with dad . At 51 he’s got a lot of life left to share with you .. it’s a fight , we can’t give in .. I’m in the eye of the storm ..but there is no known cure for #4 apc .. we extend our stay to be with our loved ones . Don’t stress or torment too much . Think positive and promote healing in you both.
Yes believe it - life becomes normal again. It’s in back of your mind but the time between worrying gets longer. My husband was diagnosed a year ago with Gleason 9 and it’s in his bones and I was a nervous mess initially but then we decide cancer was not going to be our whole lives. Believe the diagnosis and do all the things that will help and then go back to your new normal- be happy. It’s actually made us happier in some ways because we are not under the illusion that we have control of lot of life we really don’t and that’s the way it is. We don’t miss a chance to be loving or find something funny. Instead of fear focus on Being Grateful. This changed our outlook completely. Hope this helps you and your dad. You are going to be ok.
Really good - undetectable with taking ADT and Erleada .My husband had SBRT on his Mets since he oligometastatic. There is no evidence of progression 🤞🏻
I am sorry to hear that your dad will struggle with keeping a positive attitude. I am hoping that the silver lining of the disease will be for you dad to find something positive to focus on.
Try to do your best to take care of your well being too
My PCa is stage 4b T2c N1 M1 but not to my lungs. Mine is to my left femur (as far as I know). The most important thing to start with is calm for you and for your dad. There are grading charts available on the American Cancer Society website: cancer.org/cancer/prostate-...
This will help in determining the staging. to learn all you can about this disease use only trusted website like, MSCC, NIH, Cancer Society, Johns Hopkins, etc. and a book or two. One that I think is very comprehensive on staging, treatments and options is "Surviving Prostate Cancer" by Dr Patrick Walsh. He was and may still be at Johns Hopkins.
Important factors include:
1. Post operative gleason score
2. PSA doubling time (PSADT)
3. Stage of the disease when diagnosed
4. Having a medical team that specializes in prostate cancer
5. Patient age and general health
Educating yourself and your dad will take some of the fear away and replace it with knowledge, enough to ask questions of the doctors and to understand when something is critical or not, whether a treatment has a proven track record and what are the quality of life trade offs. There are many standard protocols of what treatment happens when (at least in the US) and you can ask questions here once you learn the basics yourself.
The more you know, the better an advocate you can be for your dad. Attend his appointments and always feel free to ask lots of questions. If you feel the doctor is not responsive, then get a second opinion.
Remember that there are a lot of options out there but they become more limited as the disease progresses. Most PCa patients live long lives but not all and this is why doing a crash course to know the difference is very important to making smart decisions.
Keep us posted and feel free to ask questions. Next time, please provide the stats I listed above (as much as you know) about your dad's disease. This is essential in knowing the best course of action or options for treatment.
Good luck. We are here when you need us!
Dwell only on this positive things in life and family. Do not let the thought of metastatic cancer eat you up. Your Dad needs family and friends, known and unknown, support. A wise bio-medical engineer/doctor once advised me to “Always remember that you are a Statistic of One. The only statistic that really matters is yours.” He then shared his young daughter’s fight with a disease with no known cure at the time. Today she is the mother of five, two having graduated from college.
Gleason 7(4+3) in April 2004, metastatic. Second piece of advise given by my to Radiation Oncologists, “ Find the best genitourological medical oncologist available; a prostate cancer specialist treating only our type of cancers as they are on top of their game.” I found mine in academia and research.
Final piece of advice: take Pray from all. I welcomed and accepted offers of Prayer and well wishes from Protestants, Catholic, Jewish, Muslims, Native American Church, Sun Dancers, Shinto, and Buddhists, etc. - from everybody. Put your faith in our Creator and the best medical professional available. Above all, dwell only on the positives of life and shun the negatives.
You've come to the right place for help............Sadness and fear? Sure we have it and it's like rust that never sleeps. But You must learn to live for the day.... the future will take care of itself. Hug and laugh with your Dad..... and if you should have more time update us about your Dad. All info is voluntary...
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