The decision I have to make is tearing me up

@vancouverislandhiker
Your doctor was definitely giving you some good information.

If you could last five years, they will come out with some new drugs that will help people that have Castrate resistant prostate cancer continue to keep their PSA down even after the current drugs fail. In 10 years they might have a cure, Just reading today about reversing colon cancer by turning the cells back from cancerous to normal. They think it will work with other cancers.

When I attended the mutation patients online meeting a few weeks ago, one of the doctors from UCSF who has BRCA2 told me that I’m not gonna die from prostate cancer. After all these years and my being on a multitude of drugs, She was convinced that new discoveries were going to change things. Definitely a positive point of view.

So let’s just wait for it, Some new discoveries are coming.

The urologist tells you your diagnosis, gives you two options (surgery or radiation), then says hey, it's your choice! My journey started this way about 5 months ago. My choice? What? It was like hitting a brick wall. True that urologists are surgeons, so surgeons talk about surgery. True that radiation oncologists know radiation, so they talk about radiation treatment. Oh, then you discover multiple radiation treatments, and each of those have nuances and rapidly emerging technologies. The sheer amount of information is overwhelming and makes you want to scream.

Just start doing research (this forum is excellent for personal and medical research). I wish I had gotten a second opinion from a Medical Oncologist who is neutral on radiation vs surgery, but I didn't, just researched everything with an open mind and tried to ignore professional biases. Once you see and hear it enough you start to understand the terminology and then the overwhelming amount of information turns into resources to inform your decision. Get second opinions. Ask all the doctors you talk to "why"? Why do you choose this approach and method? What are the most recent medical research papers that you trust and what are the links so I can read them too? Who do you think are the leaders in the field right now and how do I access their videos or web sites? Get second opinions with some of those Drs. After a while the best direction for you will become clear.

Take your time, make sure you understand the treatment options as deeply as YOU need, keep coming back to this forum to ask questions or just read what others have said. I researched my decision thoroughly. Six weeks of agonizing indecision, then one day the direction suddenly became clear and focused. In that I felt a calm. And keep coming back to this forum.

My neighbor took a PSA test after he heard about my diagnosis ... he stuck with his urologist's direction from day one without question and now, 6 weeks later, is almost done with his treatment and I'm only just beginning. Is my decision-making any better than his? Heck if I know, but I do know that I AM super comfortable with my decision and comfortable that I'm doing the best thing for ME.

Take a breath, take your time, do your research, be comfortable with your doctors and your treatment decisions. Keep coming back to this forum. Wishes for a long healthy life to you, my friend.

When the tumor is confined to the prostate and has not spread, focal treatment is an alternative to surgery and radiation. It's not for everyone, but it may be worth you checking out. Here's my story about the Irreversible Electroporation (IRE) Nanoknife treatment for prostate cancer.

The discovery of my prostate cancer began when my PSA had risen from the mid twos to over four. My urologist recommended an MRI of my prostate, which resulted in finding two prostate tumors. The tumors were both contained within the prostate. Next was a biopsy. I chose an ultrasound-guided transperineal biopsy because that type of biopsy uses the MRI information as a road map to make sure the suspected areas are tested. My biopsy showed prostate cancer in the tumors.

Based on my Gleason score of 3+4=7 and a Decipher test showing low risk, I was a candidate for active surveillance. However, one of the tumors abutted the edge of the prostate, so I chose to have the tumors treated. I didn’t want to risk the tumor spreading outside the prostate. I was not excited with the possible side effects of removing the prostate or treating it with radiation, so I did research on focal treatments.

Focal treatments focus on treating prostate cancer by attempting to kill the tumor(s) without removal or radiation. These treatments are not for everyone and seem to require that the cancer has not spread beyond the prostate. There are several types of focal treatment such as High-Intensity Focused Ultrasound (HIFU), Transurethral Ultrasound Ablation (TULSA Pro), cryotherapy, Irreversible Electroporation (IRE), and others. I chose the IRE Nanoknife treatment which uses electrical current in an attempt to kill the tumor. This treatment was done at Moffitt Cancer Center in Tampa by Dr. Julio Powsang.

The IRE Nanoknife procedure went well for me. It took about an hour in total, I'm sure a good part of that was the preparation after I was put under. I think the actual procedure took about 30 minutes.

After the procedure, I had some spasms that were quickly relieved by medication. I had a catheter, which I was a bit concerned about. As it turned out, I had it for six days and didn't have any problems with it. I even removed it myself, which was surprisingly painless. I removed it in the shower so any urine that might have leaked out could be taken care of easily.

After removing the catheter, I had leakage and used pads in my underwear for about six weeks. For the first several weeks, there was blood in the urine, but that eventually cleared up. Sexual function is the same now as before the treatment.

Three months after the procedure my PSA came down from 4.25 to 2.5. Six months after the procedure the PSA was down to 1.53. A multiparametric MRI (mpMRI) was also done at six months and it showed “post ablation changes of the prostate with no new recurrent tumor in the treatment area and no new suspicious lesions in the prostate." My doctor was very pleased with these results and deferred another prostate biopsy for the time being. Another PSA will be done at the one-year mark.

I'm very pleased with the results so far. Best wishes to all seeking a treatment plan best for them. I would highly recommend that everyone consult with a Cancer Center of Excellence. That type of facility is equipped with the specialists, staff and technology which is particularly effective in treating cancer. In addition to Moffitt Cancer Center, which I highly recommend, I have been a patient of Mayo Clinic for many years and have always received the best of care. Both organizations are Cancer Centers of Excellence.

Yes sir. one out of 12 I go in two days for reading of prostate mri that was done last week. I was told the right side of prostate was larger than left. I did not get decipher and anything else besides Gleason score and I did not know to ask what the percentages were. But I have notes to ask when I go back only because of the information I have received in this forum. Not sure how I came upon this group, but it definitely allows me to take little stress of myself.

The urologist tells you your diagnosis, gives you two options (surgery or radiation), then says hey, it's your choice! My journey started this way about 5 months ago. My choice? What? It was like hitting a brick wall. True that urologists are surgeons, so surgeons talk about surgery. True that radiation oncologists know radiation, so they talk about radiation treatment. Oh, then you discover multiple radiation treatments, and each of those have nuances and rapidly emerging technologies. The sheer amount of information is overwhelming and makes you want to scream.

Just start doing research (this forum is excellent for personal and medical research). I wish I had gotten a second opinion from a Medical Oncologist who is neutral on radiation vs surgery, but I didn't, just researched everything with an open mind and tried to ignore professional biases. Once you see and hear it enough you start to understand the terminology and then the overwhelming amount of information turns into resources to inform your decision. Get second opinions. Ask all the doctors you talk to "why"? Why do you choose this approach and method? What are the most recent medical research papers that you trust and what are the links so I can read them too? Who do you think are the leaders in the field right now and how do I access their videos or web sites? Get second opinions with some of those Drs. After a while the best direction for you will become clear.

Take your time, make sure you understand the treatment options as deeply as YOU need, keep coming back to this forum to ask questions or just read what others have said. I researched my decision thoroughly. Six weeks of agonizing indecision, then one day the direction suddenly became clear and focused. In that I felt a calm. And keep coming back to this forum.

My neighbor took a PSA test after he heard about my diagnosis ... he stuck with his urologist's direction from day one without question and now, 6 weeks later, is almost done with his treatment and I'm only just beginning. Is my decision-making any better than his? Heck if I know, but I do know that I AM super comfortable with my decision and comfortable that I'm doing the best thing for ME.

Take a breath, take your time, do your research, be comfortable with your doctors and your treatment decisions. Keep coming back to this forum. Wishes for a long healthy life to you, my friend.

The urologist tells you your diagnosis, gives you two options (surgery or radiation), then says hey, it's your choice! My journey started this way about 5 months ago. My choice? What? It was like hitting a brick wall. True that urologists are surgeons, so surgeons talk about surgery. True that radiation oncologists know radiation, so they talk about radiation treatment. Oh, then you discover multiple radiation treatments, and each of those have nuances and rapidly emerging technologies. The sheer amount of information is overwhelming and makes you want to scream.

Just start doing research (this forum is excellent for personal and medical research). I wish I had gotten a second opinion from a Medical Oncologist who is neutral on radiation vs surgery, but I didn't, just researched everything with an open mind and tried to ignore professional biases. Once you see and hear it enough you start to understand the terminology and then the overwhelming amount of information turns into resources to inform your decision. Get second opinions. Ask all the doctors you talk to "why"? Why do you choose this approach and method? What are the most recent medical research papers that you trust and what are the links so I can read them too? Who do you think are the leaders in the field right now and how do I access their videos or web sites? Get second opinions with some of those Drs. After a while the best direction for you will become clear.

Take your time, make sure you understand the treatment options as deeply as YOU need, keep coming back to this forum to ask questions or just read what others have said. I researched my decision thoroughly. Six weeks of agonizing indecision, then one day the direction suddenly became clear and focused. In that I felt a calm. And keep coming back to this forum.

My neighbor took a PSA test after he heard about my diagnosis ... he stuck with his urologist's direction from day one without question and now, 6 weeks later, is almost done with his treatment and I'm only just beginning. Is my decision-making any better than his? Heck if I know, but I do know that I AM super comfortable with my decision and comfortable that I'm doing the best thing for ME.

Take a breath, take your time, do your research, be comfortable with your doctors and your treatment decisions. Keep coming back to this forum. Wishes for a long healthy life to you, my friend.