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  • A place to discuss problems with ED and any other sexual side effects. Privacy: only your username and any profile picture you've added will be visible to others. If you notice any spam, please let us know at contact@prostatecancer.net! We monitor the forums regularly and do not allow spam or any form of product solicitation.

    Have been doing ADT for 20 years. Stage 3, Gleason score of 9. Original prognosis was 1-2 years. My PSA is up to 1.0. Doctors keep telling me that this is the longest they have known someone surviving with this treatment. Is there any record of length, or, limit to this?

    What are the new and improved development in curing prostate cancer

    A place to discuss challenges around prostate cancer from a gay/bisexual perspective. For both partners and patients. Share your thoughts here!

    My dad was diagnosed with prostate cancer a month ago. He is 64 years old. He had never had his prostate checked. His psa was 65, Gleason score is a 9, lymph nodes are infected through his abdomen and it has metastasized to spine and hips. I hear everything from him second hand or try to find information online, but that is proving difficult as it seems that most people aren’t as far along as he is at diagnosis. He is remaining very positive, which I think is definitely an asset to him. However, from what I read online I’m wondering how realistic he is being. I guess I just want to know the facts, no matter how hard it may be to hear. He is choosing to undergo hormone therapy and an entire month of radiation. It seems that this will be very hard on his body. For those of you that have been through this, I guess I’m asking if it’s worth it? Will it give him years more (and good years) or will it extend life but at the cost of being weak and tired all the time? Like I said he acts like he could have 5-10 more years but everything I read online says with where he is at it may be more like 2 and I am just wondering what the reality is without raining on his parade, if that makes sense?

    After dealing with treatment beginning late 2011 I am now at the point that I read about and prepared for many years back, though thankfully treatments have advanced since then. After rapid climbing of my PSA to a bit above 80, notwithstanding my long time various hormone therapies, an axium PET scan and subsequent bone and cat scans showed cancer in my femur, both illiac crest, thorasic and lumbar vertibrae and multiple ribs. I opted for a clinical trial which among other things included Zytiga with a prednisone chaser and a ton of multiple pills through out the day known only by a number. PSA has dramatically now dropped to a bit over 10 and the couple of location of pain I was having in the bones and soft tissue areas of lymph node involvement decreased. As treatment continued with it various side effects scans showed shrinking tumor cells in the bone but multiple additional areas of bone uptake throughout my body. My oncologist believes it might be a result of a phenomenon where on scan the actual healing of the bones appears to be more cancer locations. We discussed whether I should drop the clinical trial and start chemo therapy or stay in the trial and monitor in a month with a bone scan as to if the new numerous uptake are cancer or have dissipated. I opted to stay in the trial. I was informed that the chemo therapy for prostate cancer would not be so bad with side effects. Would any of you going through that or having completed chemo therapy let me know how it is/was for you and the results? I will try to update my treatments, results and other relevant information. Thank you. David

    Do you have problems with memory, brain fog, or other cognitive side effects? Share in this forum! Let others know what these side effects are like for you in daily life, and any tips for dealing with them. Privacy: all forums are anonymous and only display your username and any profile picture you select.

    Share your tips for talking to people about prostate cancer! How do you tell your story to coworkers, acquaintances, friends and lovers?

    A place to talk about personal experiences with sex and intimacy. Remember - you're welcome to discuss products, but no sales or soliciting!

    Does humor help you cope with your diagnosis? What are your favorite quips and one-liners? Did anything funny happy in the course of your diagnosis or treatment? Share it here!

    A forum to discuss antidepressants for prostate cancer-related depression - commonly triggered by diagnosis and treatment side effects. What has been your experience with anti-depressants? Do you have any tips to share? Privacy: all forums are anonymous - only your username and any profile picture you've uploaded will be visible to others.

    A place to discuss problems with incontinence and bladder function. Privacy: only your username and any profile picture you’ve added will be visible to others.

    I am new to this community. Has the community discussed this modality for treatment of Low and and intermediate risk PCa? If so- please direct me to the thread. TIA. “The TACT study demonstrated that treatment with TULSA-PRO provides safe and effective prostate tissue ablation, with little impact on men’s functional ability compared to well-established treatment modalities such as radical prostatectomy and radiation therapy,“ said Dr. Christian Pavlovich, Director of Urologic Oncology at Johns Hopkins Bayview Medical Center. “The study also demonstrated a superior risk-benefit profile compared to other ablative approaches, including whole-gland HIFU and cryotherapy. Twelve months after TULSA, my patients are all doing well, are delighted with their quality of life, and do not have any residual GG2 or worse disease. I believe that based on these positive TACT results and the inherent flexibility of TULSA-PRO as a surgical tool, should clearance in the United States be obtained from the FDA, TULSA-PRO has the potential for quick acceptance and adoption by urologists.” Source: April 04, 2019 19:45 ET | TORONTO, April 04, 2019 (GLOBE NEWSWIRE)

    Share your tips, tricks, questions and progress about recovery after treatment for prostate cancer. Have you tried Kegels? Diet changes? Other exercise? Let us know below!

    Aggressive prostate cancer? #9 on the Gleason score. What? Where do we go from here? Yes we need a CT scan and a bone scan. I have to say this news isn’t comforting to me, especially since our son died 2 months ago and I’m still reeling from that. How do I go about helping my husband through this? Where do we go from here? Polarman

    It’s one of the biggest hang ups for men who have surgery how it will affect their ability to get an erection after treatment. Everyone is very different in how things react (or not) and what treatment or aids are available to try and counter the effects and how effective they are. For me in the UK after robotic prostatectomy (non nerve sparing) my choices were pretty limited to the good old pump and a constriction ring and injections of Cavajet. The pump does have additional use for muscle exercise which replaces the normal process of erection during the night to maintain healthy tissue in the penis. Other affects of surgery mean an internal vasectomy and once thats done and the prostate are gone dry orgasms. One thing I found early on is that you don’t actually need to have an erection to have an orgasm. The mind needs to be retrained as when you look at something that under normal circumstances would create a reaction in the penis this no longer happens unless you are fortunate to have nerve sparing surgery where depending on how much is spared as to the ability for you to have a normal erection. This can also take time to come back and again everyone is different. Using the pump and ring is not great in my experience as it feels numb, has no direction or stiffness pass the ring and you are limited to 30 minutes use before needing to allow blood flow again. The rings used need to be pretty tight to be effective too and I ended up using two! The other thing is by loosing the prostate you also loose the main producer of lubrication. My experience of water based lubes on their own is not great. After battling with the pump for a while I tried the injections. One of the ingredients in Cavajet can also cause some discomfort plus other side effects but again everyone is different. For me it felt like it was going to explode and after starting on a low 5 mg dose gradually built up to 30 mg before I had sufficient effect to be useable. The down side for me is whilst it is only supposed to last for an hour or less for me it lasted for 3 1/2 hours! Not great bearing in mind how it felt and at 4 hours became a medical emergency! The first time I used it, it took 30 minutes for me to build up the courage to stick a needle in my penis! By the time I had sorted it and got back to the bedroom my partner was asleep! That was a long 3 1/2 hours! After using this for a while I spoke with my doc to see if viagra might help so I could maybe at least reduce the amount needed to inject. Without the nerves it wouldn’t work but is supposed to help with blood flow also so worth a try. To my amazement it worked on its own! It shouldn’t but it does and I am not complaining! Not sure to this day why as at 1 mm a year growth it is unlikely I have regrown my nerve endings. I have though always remained positive and never given up hope. I have tried to stimulate my mind to encourage the brain to keep active in this area. Keeping the penis active even with the pump also has the effect of preventing shrinkage which happens to all muscle if not used. Try every option, never give up and if all else fails an erect penis is not everything if you are still alive! For some the mental effect of this could well be a major issue to battle but not something I have ever allowed to consume me. Chris ProstateCancer.net moderator

    My father, Floyd Elvis Estep suffered from the same cancer that I have, Advanced Prostate Cancer with Extensive Bone Metastasis Stage 4, Dia. 2...he battled it bravely for 11 1/2 years...he was in severe bone pain and his mind was really falling off toward the end...he looked like a skeleton with skin wrapped around it at the end...he slipped away to be with The Lord in his own bed in his own home in January...he won his battle and went to be with The Lord Jesus Christ...he took to his bed in mid-October 2017 and never made it out...I think of him everyday, I still talk to him everyday in my battle with this terrible disease...he was so strong and brave!!!!

    Share your tips, questions and frustrations with hormone therapy. Please keep in mind our community rules.

    I am in my third week of radiation and have an alarming amount of gas. Is this normal?

    A forum to discuss depression related to prostate cancer. Depression is not uncommon for those with prostate cancer and can be triggered by the diagnosis, by physical and sexual side effects, and by treatments such as ADT (hormone therapy). Privacy: all forums are anonymous and only your username and any profile picture you upload will be visible to others.
Viewing 20 topics - 1 through 20 (of 33 total)